Hemophilia is for Girls

In the New Year

2012-01-29T20:38:00.000-08:00

Might as well start things off with a bang

2012-01-10T19:35:00.000-08:00

So, recently I was having back pain I thought it was from the gym but a visit to the Hemophilia Clinic revealed I have both a kidney infection and perhaps a knee bleed. I'm on antibiotics and received 4 units of Fresh Frozen Plasma. Blood work showed that all of my levels are good and I had an ultrasound showed everything is normal. I had an allergic reaction to the plasma and had to have benedryl which is never fun because the hives are so itchy and the benedryl really knocks me out. Anyways, the good part of the day was that my Dad came up to visit me. I was transferred over to the ward and Dad and looked at pictures on his laptop. Looking at the pictures made me feel like a person, like someone who travelled, who had good times and has people who love them and reminded me that I have a wonderful full life and I am not just some diseased thing sitting in a bed with cords and drugs being pumped into me.

While I was in the hospital I spent an hour with two other roomates one older man with cancer and another older lady also with cancer.

It reminded me of the last time I was in the hospital in August, in the exact same room in the exact same bed unfortunately my roomate at that time has since passed away. She was a wonderful roomate, so warm and friendly.

It brings me back to my notion that I am very lucky to be here, we are all very lucky to be alive and while I am here I want to do the best I can with the short time we have! I don't know what that is yet but I'm working on it!

Inspired 2012

2012-01-02T19:03:00.000-08:00

So, tomorrow it's back to work for me! I can't believe it really. Christmas vacation went so fast I wish it could just go on forever.

Anyways, with the new year I have been thinking about things I can do in my every day life to make myself happy. So far I am looking forward to my trip to Paris and my trip to Newfoundland. I am also looking forward to planning my wedding which is set for 2013.

A lot of times in our lives we do what we have to do, we work day in and day out at jobs we don't like and we just get through things one day at a time. I am proud to say that three people that I grew up with in my home town of Stephenville, Newfoundland took the time to figure out what they really want to do in their lives and have started a snowboarding company. Their passion for all things snowboarding really shows and if you are into snowboarding I strongly recommend that you check out their site maginesnowboards.com.

Happy New Year!

2012-01-01T18:25:00.000-08:00

So, last night we rang in the new year with good food and good friends! Since it's the new year I thought it would be a good idea to take a moment and look back at the year we've had. First of all we celebrated New Years 2011 in Newfoundland which in my opinion you can't ask for any better than that! February was a bad month in that I ended up in the hospital for a few nights with a leg bleed, then in March Zane tore his calf muscle and was off work for three months. I started working full time in March so that was good Zane also became a Journeyman Electrician in 2011. In August I had a ruptured ovarian cyst and ended up in the hospital for a few days and in November I had one of the hardest things I ever had to deal with my in my life. I missed my darling sisters wedding because of my health. I was never so disappointed and hurt in all of my life. December was also a very hard month in that I had to work 12 days straight leading up to Christmas and I found it very stressful However, after work finished up for the year things got a lot better we have a beautiful Christmas with our families and rang in the new year in good health so although we have had lots of ups and downs I have hope that 2012 will be a great year. I'm looking forward to good health, to going to Paris in July and to going to Newfoundland for my wonderful friend Stephanie's wedding! I am also praying that all my friends and family have a healthy year!

It's as far away now as it will ever be

2011-12-30T15:02:00.000-08:00

So, Christmas this year was very special in that we got to spend time with all four sets of parents for the first time ever!

It was so nice I must say. And at the risk of speaking too soon I must say that I stayed out of the hospital the entire time.

I head back to work on Tuesday and I am already having anxiety about it. I just love sleeping in and spending the whole day in my pjamis.

I'm not ready to head back into reality yet. I want to hide out underneath the covers a while longer. I hope everyone had a great Christmas and stayed healthy.

I love Paris in the Springtime!

2011-12-12T11:57:00.000-08:00

So, I am very pleased to say that I am the recipient of the 2012 Karttik Shah Fellowship. Which means I get a paid trip to PARIS for the World Federation of Hemophilia World Congress in 2012, July 8-12. When I first got the news I was excited, then nervous, then scared and now I'm back to being excited again! As you know, I have never left Canada so the thought of travelling all the way to France is a bit scary so I spoke to my Hemophilia Clinic and asked them for advice. It turns out that both of my Hematologists will be there and they will be setting up a Hemophilia Treatment Centre on site. I am also going to the gym three times a week and I am trying to get in the best shape I can before I go to try to be as healthy as I can. I am so excited about travelling to Paris, I have been in French Immersion ever since I was 5 years old and I also took some French Courses in University so I am glad I will get a chance to put all those courses to good use. I really want to go to the Notre Dame Cathedral, the Louvre and he Eiffel Tower. I am also looking forward to meeting other Hemophiliacs and Volunteers from around the world. I know other people who have attended the world Congress in the past and they said it is a wonderful experience. I feel so blessed for this opportunity! For more information check out www.hemophilia.ca.

Ryan White

2011-12-06T20:35:00.001-08:00

So, today is Ryan White's Birthday and besides the Alexei the Tsarevich he is one of the most famous Hemophiliacs ever. He had a song written about him by Elton John, he drove a sports car given to him by Michael Jackson and has been on countless TV shows and talk shows but Ryan White's life was hard and I don't mean, I have acne and I didn't make the basketball team hard I mean having not one but two terrible life threatening diseases hard. Ever since I heard about Ryan White I felt like we had a lot in Common, his name is Ryan, my name is Ryanne, we both have Hemophilia and we both have moms named Jean! Ryan was born with severe Factor 8 Hemophilia and was later diagnosed with HIV from tainted blood. He died just months before his high school graduation. His story is so sad and heartbreaking but instead of taking it lying down Ryan spoke out about Hemophilia and HIV and made things so much better others. The fact that I was unaffected by Hepatitis or HIV during the tainted blood tragedy is a miracle. and I sometimes feel like I was spared and so I have to do something fantastic or extra special with my life and as of right now I'm not 100% sure what that is but I am a very active volunteer in the Hemophilia Community and although I don't know if I will ever make an impact as huge as Ryan has, I am certainly gonna try. I just pray I don't ever have to go through what he had to because I complain enough now with my life the way it is and I have a great fiance, family and friends who are nothing but supportive and kind to me and I don't know how he did it. But I am so grateful that he did.

Christmas Party

2011-12-05T19:33:00.001-08:00

So, we just had our annual AGM and Hemophilia Society Christmas Party. I have to say it went really well. We raised about 300$ for the Calgary Chapter so that is always good news. We also had fiddlers, great food and a visit from Santa! It was so nice to see how excited the little children got when he walked in. I was really excited too because this year my Dad was Santa which was a lot of fun and its nice to have such great support from my family.

The party went until about 9 pm and by the time I got home I was so exhausted from laughing and talking to everyone that I went right to bed. Even thought we don't know each other and we all come from different backgrounds I find we all get along really well. It also got to talk to some of my Zoo Girls which was so nice, They are so beautiful and sweet its always nice spending time with them. Since the Christmas Party I am now looking forward to our Volunteer Appreciation event. Spending my whole life without being around other people with bleeding disorders made me feel like an outcast so I now delight in being around other bleeders!

Alberta Children's Hospital

2011-11-28T19:53:00.001-08:00

So, today I had a meeting at the Alberta Children's Hospital with the staff from the Hemophilia Treatment Centre there. The hospital was just beautiful and had so many facilities and play areas. As I walked through the halls of the hospital I couldn't help but think of the year my mom and I spend in the Janeway Children's Hospital in Newfoundland. My mom and I tried to make the best of it we would take late night wheel chair rides around the hospital, we watched countless movies, made crafts but it was a very difficult time for both of us. By the time I made it to the Hemophilia Clinic I was in tears. It broke my heart to think of what I put my mom through and it hurt to see such cute little children in wheelchairs and hooked up to IV's, it was really hard to see. Looking back on all those hard times as a child I have no idea how I got through it, I know my mom and dad were a huge help and I also had a lot of prayers. Kids are just so cute and sweet I don't think they should get sick, illness should be for adults only. Now that I'm all grown up I do feel it's important to help other children who may be in the same position I was. The meeting with the staff went really well. We all want the same thing, to make life easier for people with Hemophilia. We came up with a lot of ideas and I look forward to working them! Another thing I am looking forward to is the Hemophilia Society Christmas Party this Saturday, we've spent a lot of time planning it and I hope everyone has a really good time.

Octaplas

2011-11-24T20:20:00.001-08:00

So, today I went to the Hemophilia Clinic to get my hip looked at. It's been causing me some pain over the past few days and so I thought I would get it looked at just to make sure. They told me to rest it and ice it and if it's not better by tomorrow they recommended I come back and get treated with Octaplas. It's a fairly new product it is essentially a detergent treated plasma and it supposedly reduces the risk of transmitting blood borne pathogens and reduces the risk of reactions. Those are obviously huge improvements for me but again I've never taken it before so I'm still not sure how it will affect me.

You see I've been taking Fresh Frozen Plasma for 28 years so the thought of changing to something new all of a sudden is scary. Another down side is that its the same volume so it will still take a long time to infuse. So not only to I have the joy of hip pain but I also have the joy of having to read this 30 page article about Octaplas!

Momma Bear

2011-11-20T22:22:00.001-08:00

So, my mom was visiting me for the past ten days. It was the such a wonderful trip and I am still finding it hard to get back into the swing of things. I know a lot of people love their mothers but I just adore my mom. She is one of the kindest, sweetest, funniest people I have ever met in my life. My mom is the type of person that would do anything for me. Being the mother of a Hemophiliac puts you in a special class she not only had to deal with all the regular child raising problems but she had figure out how to deal with a severe factor 5 Hemophilia with little information from doctors, no hemophilia treatment centre and no hemophilia society. As I've mentioned before I have no family history what so ever of Hemophilia or any bleeding problems what so ever. So when I came along know it came as quite a shock to both of my parents. But instead of being scared mom was quite fearless when it came to raising me. She showered me with love and attention, she let me roller skate, skip and bike ride. She made me feel like a normal little girl and because of it I think it allowed me to not be afraid of my condition. After my mom leaves I always feel sad for days, she is my best friend and I feel very guilty for living so far away from her, I'm trying to convince her to move to Calgary and I am hoping to visit her in February for a week or two. Our time together always seems too short but at the end of the day I am blessed to have such a wonderful momma and that's what I need to remember.

Hope

2011-10-31T13:05:00.000-07:00

So, as you know I am suppose to be getting ready for my sisters wedding. Today is my day off and I am suppose to be going for a spray tan, getting my nails and packing up for my first trip to Las Vegas to see my darling sister get married. But instead I am making pros and cons lists and frantically calling insurance companies to see if there is anyone who will cover me. Despite everything, I still have hope. It's a funny thing about hope i find it nearly impossible to get rid of. No matter what people tell me I still have hope that things will work out for me that things will go well. Now is one of the times that I wish I could shake it. If I could just get rid of the want and desire and hope of going to my sisters wedding then I could move on with my life, focus on going back to work, focus on taking Zane to the knee specialist today but instead I have this hope in my heart that will not let go of the possibility of going to Kelli's wedding. I guess hope is one of the only things that keep us going, without it I'm sure I would be curled up in a ball somewhere crying inconsolably. I guess when I run out of hope I know I will really be in trouble. As for now I'll just wait and see.

The Princess Bride

2011-10-28T18:32:00.000-07:00

So, most people tell stories about their little sisters coming into the world as a bit of a stressful time. They talk about craving their parents attention and feeling envious of the new baby. However, that was not the case with my big sister, Kelli. I don't think anyone was as excited as Kelli when I was born. My mother always tells the story about how every night Kelli would get out of her bed, walk to my nursery and climb in my crib with me because she wanted to see me. As we got older Kelli and I had our own rooms and being eight years apart she was glad to have her own space but I wanted to sleep with my big sister every night and instead of getting mad Kelli would open up the covers and let me snuggle up with her. I know it's the little sisters job to be a brat, but I wasn't just any little sister, I was spoiled rotten and I was sick so that made me think that I could do anything or have anything I wanted. Until the age of about 12 I believed that the earth did not revolve around the sun but it revolved around me. Kelli could of ignored me but instead she embraced me for who I was, she came to the hospital with me, took me to the ice cream parlour, bathed me, changed me and taught me how to read. Kelli was not only my big sister but my best friend and second mom. She took my Hemophilia in stride and never would show how hard it was on her. When I was crying in pain in the middle of the night she would go and get hot towels and place them on my legs and she spent many hours in the emergency room with me. As adults her instinct to protect me never changed. She was always there for me when I would go through a bad break up, got a bad mark in school or had a fight with a friend. I honestly don't know how I would get through life without my big sister! Now it is time for her to get married. She is marrying a wonderful man who has been a friend of the family for years and we are all very happy for both of them. Kelli's wedding will take place on November 4th in Las Vegas and it kills me to think that I will not be there to see it. I was just treated for a leg bleed and had 8 units of plasma over the past two days. My hematologist has advised me not to go because I am at risk of re bleeding and of course now my insurance is void because I have been hospitalized 7 days prior to flying. I am angry and sad about not being able to attend. I feel that Kelli has always been the one taking care of me and helping me and now on her wedding day I can't support her and be there for her. I know there is nothing I can do about it and I'm suppose to calm and accepting but inside I am so hurt. I feel like a little kid again and everyone is out skating and I am home in my room crying. At the same time I am so happy for my sister. I know her and Shawn will live a long and happy life together and the main thing is that they are together and happy and I will be thinking of them on their special day.

Thank heaven for little girls!

2011-10-24T19:09:00.000-07:00

So, I must say the Zoo Sleepover was a big success! I had 15 girls show up and 2 moms to help out. We had presentations, gift bags, snacks, crafts and even a bedtime story! The girls were so well behaved I didn't have to say a work to them all night, they were sweet and polite and respectful. I think I had the most fun of all to be honest. I love being around the girls I forgot about everything that was stressing me out and just enjoyed my evening and even though I slept on a rickety cot I had a wonderful sleep and I feel so good in the morning. I love walking around the zoo in the morning on our way to breakfast singing and laughing with the girls. It was a wonderful experience and I am hoping to do it again next year. Since I have been involved with the Canadian Hemophilia Society for the past four years or more but this was the first event I planned all by myself. Speaking of the Hemophilia Society, we are currently selling Christmas Cards, there are 20 in a pack with four different drawings by Children affected by a bleeding disorder, each pack is $20 with all the proceeds going to the Southern Alberta Region of the Canadian Hemophilia Society so we can plan more wonderful events like the Zoo Sleepover!

Zoo Presentation

2011-10-22T15:25:00.000-07:00

Hello Everyone.

I would like to say Thank you to you all for coming. I hope you have a lot of fun and learn some new things.

I would also like to say thank you to the Chaperones tonight I really appreciate you taking the time and helping me out with this event.

I would also like to say thank you to the Pharmaceutical Companies who donated very generously to this event. We will be signing Thank you Cards later on tonight for them.

Also, a special thank you to Sherri and Hulda for being here this evening, You did a great job on the presentation.

So, my name is Ryanne Radford, I am a severe factor 5 Hemophiliac. It is a Very Very Rare disease there are only 150 cases reported world wide.

I have no family history of it. I grew up in a very small town and there was not Hemophilia Society in my town and I sometimes felt sad that I didn’t know of any other people who were like me!

When I was about 12 years old I started to have a few problems with my period, so my aunt searched online for me and found a lady in North Carolina who also had Factor 5 hemophilia so I would often call her and ask her all kinds of questions about anything and everything.

Does Anyone have Someone in your life that you go to with Problems?? Raise your hand!

That’s what I would like to encourage you girls to do, if you are curious about something or would like more information ASK FOR HELP!

Who can you Contact if you have Questions about your Hemophilia?
Contact your Clinic, Contact the Hemophilia Society or Contact me. Anyone of us would be happy to help!

Having Hemophilia had been hard for me, I have had lots of blood transfusions and have stayed in the hospital over night but I have lived a pretty normal life.

I graduated from High School with all of my friends, I went to University for Four Years and Graduated with a Journalism Diploma and a Communications Degree. I currently work full time doing marketing at a Diamond Exchange Company. I am also Engaged to Zane, he is an electrician and we live in the SW with our Tiny Dog Lily. We have lots of wonderful friends and family and we both really enjoy working with the Hemophilia Society. I became involved about 5 years ago. Right now I am the Co President of the Calgary Chapter of the Canadian Hemophilia Society, so I get to plan fun nights like this, and we have Christmas Party December 5th and lots of fun Stuff like that.

Also, I am The Co Chair of the National Youth Committee. I get to Travel once a year to Montreal and we stay in a beautiful hotel and I get to meet all the youth from across Canada, We plan activities and conferences that Happen once a year.

I really think it’s important to Volunteer because it helps other people living with Hemophilia around you but it also helps you too. For example, Volunteer Work looks really good on a resume, it helps improve your reading and writing skills and you get to meet new friends.

Have any of you Volunteered in the Past?? Raise your Hand.

If you would like to Volunteer with the Hemophilia Society please take one of the pampletes on the table.

Does anyone have any questions that they would like to ask me?

If you have a question that you would like to ask privately please feel free to do so anytime.

Thank you so much for coming!

Ryanne

Catching some Z's at the Zoo

2011-10-21T21:05:00.000-07:00

So, tomorrow night I will be sleeping at the Zoo! I never thought I would say that. I've planned a Sleepover at the Zoo for girls affected by bleeding disorders. We have about 14 girls coming and two other moms are sleeping over with me to help out. I am speaking at the event for about a half hour and I've been struggling what it is I want to say to these girls. The overall thing I want them to know that if they ever have a question, no matter what it is I will be available to answer it for them. Until the age of about 13 I had never talked to another female Hemophiliac in my life, so when I had questions about growing up with Hemophilia, no one could answer me, not my mom, not my doctor, no one. Until I got in touch with Sadie. My aunt Diane had searched the Internet for me and found a lady in the US who not only had Hemophilia but was a severe factor 5 Hemophiliac! I use to call Sadie night and day and we would talk about anything and everything, Can I get my ears pierced? Can I go into the Steam Room at the gym? She was so patient and kind with me. No matter what was going on in my life as soon as I heard her soft sweet voice on the other end of the phone I knew everything was going to be ok. I figured if Sadie got through it then I could get through it too! To this day I still keep in touch with Sadie and it is my dream to meet her one day! Being a woman is not easy and being a woman with a bleeding disorder is particularly tough bu it's important to keep a positive attitude and reach out to you family and friends around you when you need to. That's what I've been doing for 28 years an it's worked for me!
I don't know exactly what I will say to those girls tomorrow night but I hope they know that no matter how bad things get there is a wonderful, supportive bleeding disorders community out there! and I hope we don't get eaten by bears.

Tired

2011-10-20T22:01:00.000-07:00

So, I've been feeling overwhelmed lately. Zane's appointment at the knee clinic didn't go as well as I had hoped. The plan is they will do an MRI in a week or two and then from there they will decide if it's a ACL strain or complete tear that will help them determine how long he will need to recover. The doctors best estimate right now is 6-8 weeks so of course I had to cancel Zane's trip to Vegas. I'm very disappointed and heart broken for Zane. It's hard to seem him in so much pain. In the meantime I am on my third day of working 12 days in a row and on Saturday I have the girls sleepover. Don't get me wrong I am really looking forward to the Girls Sleepover. I have been planning it for months and I am really looking forward to meeting the girls but planning this has been a lot of work, booking the zoo, contacting all the companies for funding, calling every family and inviting them by phone, buying all the supplies and it's stressful because if things don't go well it's all on me but at the end of the day I hope people remember that I am just a volunteer. Sometimes I think maybe I am spreading myself too thin and sometimes I feel like I'm not being effective. I could stop volunteering in Hemophilia which would make time for other things but I can't help but think about the fact that I may not always have a job but I will always have Hemophilia and while I am well enough I have to do as much as I can and even if its just writing silly blog posts here and there or responding to e mails I have to think it's doing some good.

When the going gets tough...

2011-10-17T18:15:00.000-07:00

So, as you know Zane recently injured himself playing basketball. I took him to the doctor today and she said that it doesn't seem to be improving even though it has been almost two weeks. He prescribed him some new medication and he is going to see the knee specialist on Wednesday so hopefully they will be able to tell us more information as of right now, we do not know exactly what is wrong with his knee. The doctor also informed him that he might not be able to go to Vegas, which we pretty much knew from the beginning. I am very upset and disappointed about Zane's injury. I'm really not a very good nurse and I have found that I would must rather be the sick one then to watch Zane be in pain. I'm also surprised at how painful his knee injury is. I always thought of non-Hemophiliacs as unstoppable they get hurt and just get right back up again. It might take a little bit longer this time around but we will just have to make the best of it! That's what we've always done in the past and that's what we will have to continue to do!

Fall Out Follow Up

2011-10-12T20:36:00.000-07:00

So, after all of the problems I had at the hospital in August I decided to contact the hospital and tell them about what happened. The nurse said she would follow up with the charge nurse on duty that night and the nurse on call in the Emergency room. I followed up with her about 4 weeks later and she informed me that she spoke with everyone involved and they have been informed that there was a complaint made. I don't really know how much this helps the situation and in some ways I don't feel any steps were taken so that this doesn't happen again. The person I contacted was very nice and apologetic and I truly believe the nurses involve probably do feel bad but my goal wasn't to make anyone feel bad. However, some good things did come out of it in that because of this whole ordeal we have decided to make the focus of the next National Youth Committee retreat to be about ADVOCACY. Advocacy has always been a huge part of having a bleeding disorder. You have to advocate for yourself at home, at school, in the workplace and most of all at the hospital. It's unfortunate but it's part of living with Hemophilia. I guess at the end of the day I should just be happy that some good came out of all of this!

When it rains it pours

2011-10-10T18:49:00.000-07:00

So, last week Zane was at basketball and injured himself. He came home Wednesday night in the most pain I've ever seen him in. We took him to the doctor and they said his knee was too swollen to diagnose him just yet, an x ray showed there was nothing broken but other than that they can't tell what going on. They gave him naproxen to help with the swelling and Tylenol 3's as a pain killer but he is still over come in pain. He in on crutches and we've been elevating it and icing it. I have to say that things run much more smoothly when I'm the sick one and Zane's the healthy one. I am not as good as helping him as he is to me and it is much easier being sick myself than seeing him in pain. It absolutely breaks my heart and I feel helpless. So far Zane has had to miss three days of work and hasn't left the house. The medicine is hurting his stomach. We are waiting to hear back from the Knee Clinic at the Foothills Hospital and I am hoping and praying that they are able to help him ASAP! Despite all of this going on I still cooked us a delicious turkey dinner and today I made a delicious turkey pot pie. My friend Cheryl came over today to cheer me up and do my hair. I must say a little company was so nice for both Zane and I. Since today is Thanksgiving I must say I am very Thankful for all of our friends and family and especially Zane and Lily I just wish we could be a little bit healthier!

Yoga for Corey

2011-10-08T18:57:00.000-07:00

So, I received this e mail today from one of my Hemophilia friends on behalf of Corey a severe Hemophiliac. I hope you take a minute to read and find out how you can help!

I am writing you this letter because I will be starting a 200 hour, yoga teacher training program this fall and I would like your support.> > This is an accredited ‘Yoga Alliance’ program taught by one of the> > most skilled and recognized yoga instructors in Portland, Oregon,> > Tiffany Cruikshank (http://tiffanyyoga.com/). This training will cost> > $3,490 and I will need assistance and sponsorship to make it happen.> > > > I am 25 years old and I have been practicing yoga for the past two> > years and over that time I have realized considerable health benefits.> > I am pursuing this accreditation to further my understanding of yoga,> > and to teach and inspire others with blood disorders. On a deeper> > level I am doing this training to contemplate, appreciate, and find> > acceptance for my own body.> > > > As you may be aware, I have severe hemophilia and as a result of this> > disease I have sustained more injuries than I can possibly count,> > leading to arthritic joints. I realized at a young age that I needed> > to do something to try and stop the cycle of injury but it was a> > struggle figuring out what exactly I should do. After little success> > with stints in swimming, cardio, and weights, I opted to have a> > surgical ankle fusion performed in January of 2009 to alleviate> > chronic ankle pain. At the time, the pain in my ankle was making it> > extremely difficult to do anything aerobically. To rehabilitate from> > this surgery I decided to try yoga in hopes of regaining muscle in my> > atrophied leg. Not only have I been able to bring strength back into> > my leg, but I have been able to significantly decrease the number of> > injuries I sustain even though I am considerably more active now.> > > > Yoga has also been an extremely valuable tool for maintaining my> > psychological well-being. Graduating from college into a recession was> > very difficult but I was able to remain balanced and bring meaning to> > my life while I searched for work by challenging myself in class to> > improve my ‘asanas,’ or poses in yogi speak. I feel strongly that I> > eventually found work, in part, due to an optimism that would not have> > been there without yoga in my life.> > > > Since beginning my yoga practice I feel as though, for the first time,> > I may be able to live a long and healthy life. It is because of this> > that I feel so strongly that yoga needs to be taught to everyone with> > blood disorders. While interning with Bayer Heath Care (Bayer> > Pharmaceuticals) I developed the idea for “Living Fit: A Joint Effort”> > (http://www.livingwithhemophilia.com/webapp/livingfit/), a program> > designed to encourage and give instruction on safe physical activity> > for kids with hemophilia. I am proud of having had a hand in this> > program, but there is much more that needs to be done to help people> > with blood disorders live long and healthy lives.> > > > Upon graduation from this program I hope to begin teaching and sharing> > what I have learned to people with blood disorders young and old. I> > will do this through summer camps for the young and support groups for> > the old. When my training is complete I look forward to sharing my> > knowledge at the 2012 Hemophilia Foundation of Oregon Summer camp. In> > following years I would like to visit the surrounding states summer> > camps to teach. While there are many people who have championed the> > practice of yoga for hemophiliacs, most of them have been nurses,> > doctors, physical therapists or other health professionals. As a> > living example of what yoga is capable of, I believe there is a great> > deal of value in the message being delivered from someone who has> > lived it. I hope to inspire and encourage in a way that health> > professionals simply cannot.> > > > I have sent this letter because I believe you may be able to help me> > in this pursuit. Any donation would be a huge help towards this cause.> > If you are willing to support my education please respond to this> > letter and I will put you in contact with those responsible for the> > training. You may also contribute via the following website:> > http://coreyyogatraining.chipin.com/yoga-teacher-training-for-corey> > > > Sincerely,> > > > Corey> > > > > > http://coreyyogatraining.chipin.com/yoga-teacher-training-for-corey.

Sleepover at the Zoo

2011-09-13T15:46:00.000-07:00

So, A few months ago I came up with the idea to plan a Sleepover at the Calgary Zoo for young women ages 10-16 who are affected by bleeding disorders. I was inspired to create a girls only event after attending a Women and Bleeding Disorders Conference here in Calgary put off by the Canadian Hemophilia Society. I really enjoyed the event and it helped me realize that I wasn’t the only one going through all of this difficult medical stuff. It also gave me the opportunity to interact with other female Hemophiliacs and ask them questions. I made friendships that weekend that I cherish and I’ve learned things from the other woman that no book could ever teach me and I really want to offer that opportunity to other young girls. I often say that 80% of my major bleeds have been due to the fact that I am female so I really feel it’s important to educate and support young women about their bleeding disorder. My hopes for the sleepover are that it will be both fun and educational for participants. We will be having a special presentation from Hulda Niv, Social Worker for the Southern Alberta Pediatric Oncology and Bleeding Disorder Program at the Alberta Children’s Hospital. Niv will be talking about self esteem and will give the participants a chance to ask questions. I will also be speaking briefly to share my personal experience and to talk about the CHS and how it has helped me cope with Hemophilia and how it has helped me improve my public speaking skills and writing skills. I will also mention how I’ve used my blog Hemophilia is for Girls to share my experience with others and connect me to other resources and support. Education materials publish by the CHS and World Federation of Hemophilia will also be available at the event. Our own personal zoo keeper will treat us to a tour of the Canadian Rockies section of the Zoo and we will sleep under the stars. The Girls Sleepover at the Zoo will take place on October 22, 2011 at the Calgary Zoo at 7 p.m. Anyone who is interested in participating can contact Ryanne Radford at ryanneradford@hotmail.com.

9/11

2011-09-11T22:46:00.000-07:00

So, today is the ten year anniversary of the September 11th attacks. I couldn't help but watch all the touching tributes today on TV. I remember exactly where I was on September 11th ten years ago. I had been visiting a friend in Nova Scotia and I was travelling back with his grandmother to Newfoundland on the ferry. As we are driving we start to hear all these announcements on the radio describing what was going on in New York City. We just couldn't believe it was hard to figure out what was going on and the fact that we were listening to the radio did not help, it felt like it was some kind of joke. As we were travelling Pauline starts to tell me about how her husband was in the war and during war times they actually bombed the caribou ferry. My disbelief started to turn into fear over our 12 hour journey to Newfoundland. When we finally arrived in Stephenville, Newfoundland our tiny little town was turned into a safe haven for planes that had to make emergency landings after the attacks. Once I drove past the airport and saw all the planes from different countries it really set in. Watching the tributes today was not only heartbreaking but really eye opening as well. I had no idea that the service workers suffered from so many medical conditions as a result of the toxins in the air that day. Those brave people were simply trying to help and they should have nothing but health and happiness for the rest of their lives but instead they are sick and dying. The fact that this tragedy was planned is scary to me. I like to think that people are good and decent and that the world is a beautiful place the fact of the matter is there is evil in the world and all we can do is pray for health and happiness!

Happy Birthday to you!

2011-09-10T12:39:00.000-07:00

So, Today is a very special day for me. Today I am celebrating Zane's 26th Birthday. Every time we get to celebrate a birthday together or any special occasion I feel very blessed. Zane and I actually met the day of his 19th birthday. We were both going to school at Cape Breton University in Cape Breton, Nova Scotia. Zane was sharing a dorm room with two other guys from Stephenville so although I didn't know him personally I knew of him and I knew he was celebrating a birthday. I thought it would be nice to buy him a little present so I bought him some beer. He must of liked it because we started hanging out together more and more and we have been together ever since! It's hard to find someone that you can laugh with and grow with. Zane and I have been together for seven years now and we aren't the same people we were when we first met but over the years we have continued to treat each other with respect and kindness and I think that has helped us stay together. We have spent birthdays and Christmases together in the hospital and we've spent some birthdays together celebrating until all hours of the morning but no matter what, we've been together. I think Zane is the most intelligent, sweet, kind, funny, honest man I have ever met and I feel so blessed to call him my fiance and to be spending another birthday with him. Happy 26th Birthday Zane, I love you and I pray we get to have another 62 more birthdays together!

Infection Part 3

2011-09-02T17:56:00.000-07:00

University of Calgary Talk

2011-09-01T10:48:00.000-07:00

So, yesterday I spoke at the University of Calgary to about 150 first year Medical Students. I talked for about ten minutes about my health and personal experiences and then they asked questions for about 40 minutes or so. In my opinion it went really well. The students seemed genuinely interested in learning more about Hemophilia and they asked some very intelligent questions. After class ended a few students stayed behind to say thank you. One of them even asked to Volunteer with the Hemophilia Society. It was so nice to get the positive feedback from them because I am in no way a professional speaker and I still find myself getting very nervous no matter now many times I have a public speaking engagement.
I have to admit I wish I was there speaking about something else besides how sick I am an how crazy my medical history has been but I guess you have to play the cards your dealt!

Here is a rough draft of what I spoke about and if any of the students are reading Thank you so much for your time and attention I really appreciate and I think you guys will make great doctors!

My name is Ryanne Radford and I am a severe factor 5 hemophiliac. I grew up in a small town in Newfoundland to a family with two older healthy sisters and a health mom and dad so it came as quite a shock to them when I began having huge unexplained bruises and bleeding from my ears. I was eventually diagnosed with Hemophilia at the age of 7 months old after a fall off the couch resulted in a large hemotoma.

In the beginning it was hard for the doctors to diagnose me because I have no family history of hemophilia and I am female. At one point my doctors had questioned my parents about possible physical abuse?

After receiving my diagnosis my parents were told this is a very rare condition, according to the Canadian Hemophilia Society there are only 150 cases of Factor 5 defiencey reported world wide.

The treatment I receive for bleeds are typically 4 units of fresh frozen plasma. I have had bleeds into, my head, chest, ears, nose, gums, shoulders, elbows, wrist, abdomen, hip, knee and ankles.

One of my worst bleeds was into my illiopsas muscle. I was treated at the foothills hospital almost three years ago now with 50 units of FFP and three months of bed rest.

Although the joint bleeds can be debilitating and frustrating at times by far my biggest problems have been with my ovaries.

I started my menstrual cycle when I was about 11 years old. Each month it would get heavier and heavier and I eventually had an ovarian cyst that ruptured and bled out into my abdomen. I was flown air ambulance to the hospital, my family was called in to say good bye to, it was a very traumatic experience. I was in the hospital that year for almost on entire year, during that time I completed grade 7 and received 150 units of FFP.
The doctor contemplated doing a hysterectomy but felt it would be too aggressive so I began taking a medication called synerl which imitated menopause. So at 12 years old I was having hot flashes and mood swings.
Over the years I’ve used various different types of Birth control pills to manage my cycle and they have worked for the most part however, I’ve continued to have ovarian cysts rupture and bleed out into my abdomen that seems to be the biggest problem for me.

Wednesday August 17th, I came to the emergency room with severe abdomen pain. A CT Scan revealed a mass in my abdomen which came about from an ovarian cyst that ruptured and bled. I was admitted for 5 days and treated with 25 units of fresh frozen plasma. An ultrasound showed that the mass was getting smaller. I was discharged from the hospital on Monday august 22nd and returned to normal activity on Thursday August 25th.

I am meeting with my Gynecologist next month to discuss the possible use of Lurpon to prevent ovarian cyst. So we will see how this goes.

As you can hear from my story it takes several doctors working together to treat me at times and it’s really nice when doctors take the time to build working relationships with other doctors in other specialties so things can run smoothly for me.

Hemophilia has been challenging for me Over the course of my life I estimate that I have received more than 2,000 units of fresh frozen plasma and have spent more than 5 years in the hospital.

When I am thinking of all the doctors I have had in my life the ones that stand out in my mind are ones that listen to me are kind to me.

I know that at the end of the day doctors are just regular people and it’s impossible for them to know everything but by simply listening the patient and having respect for them certainly goes along way.

I’m not sure if anyone in this room has ever been a patient but in my experience doctors were always super human to me, they would come in and help me at a time when I was in so much pain, frustrated and confused. I have the up most respect and admiration for my hematologist.

Another great thing to do for your patents its to explain to them what is going on. Theres nothing worse then when a nurse comes over and starts hooking you up and you have no idea why she is hooking you up and for what.

I have tried to overcome the obstacles in my life, I have a communications degree and a journalism diploma, I currently work full time here in Calgary. I also have become very involved in the Canadian Hemophilia Society. I am currently the co president of the National Youth Committee and co President of the Calgary Chapter of the Canadian Hemophilia Society. I also write a blog called Hemophilia is for girls. The blog is dedicated to raising awareness for women with bleeding disorders.

You can learn more about the University of Calgary at http://www.ucalgary.ca/.

All healed up and nowhere to go!

2011-08-29T14:25:00.000-07:00

So, I went back to work on Thursday and worked until Saturday. I have to say its very anti climatic. I feel like sometimes when you suffer through things, for example a really hard workout, or studying hard for school there is normally this big pay off. However in my case, after suffering for a few days in pain and trying to get back to normal, there's nothing really remarkable about it. Life goes on, work goes on and nothing stops just because you are sick for a few days. Don't get me wrong I love sleeping in my own bed and being able to grocery shop and do the laundry but theres something strange about the whole transition. I guess there's no award for spending a week in the hospital! I think there should be! Just like the MTV music awards except people would be awarded for overcoming obstacles. Might not draw a lot of viewers hey? In other news I had a physical today, I got my ears, nose, throat, blood pressure, temperature, breasts and eyes checked and I am happy to report that besides having a mass in my abdomen I am perfectly healthy so that is great news. I've been trying not to get too stressed out and trying to rest as much as possible but thats sometimes hard to do with work as I am a bit behind from being off for a few days. Also, I am anxious about getting back to the gym but I will have to wait another week for that. In the meantime I will continue to rest and do my best to keep up.

Fallout

2011-08-24T16:52:00.000-07:00

So, I spent 6 days in the hospital and now I am home safe and sound end of story. I wish it was that simple I really do. Even though the crisis is over and the internal bleeding has stopped I still have a small mass of blood hanging out in my abdomen which is still a bit painful and after spending six days in a hospital bed my energy level is very low.

Also, I just missed a week of work which really bothers me. I've only been working with this company for 5 months so it doesn't look good on my part to be out sick for such a long time. I can just picture the pile of work on my desk waiting for me when I get back.

In terms of medical follow up I am going to see my gynecologist in a few weeks. The suggestion has been made that I take a medication called Lupron. The idea behind it is will cause my body to think it's going through menopause. AGAIN. Yes I am 28 years old and have already been through menopause and I am not looking forward to going through it again. Hot flashes, mood swings not what I thought I'd be going through at 28. I should be picking out baby names and buying maternity clothes!

Anyways, hopefully the medication will shut everything down and stop my ovaries from producing cysts. I am worried about it however because it can cause problems with bone density and things like that, so we may look at adding hormones back in so that it will minimize the side effects.

Another thing that I can't get out of my head is the treatment I received at the hospital, it was awful. First of all, I registered to see the doctor at 7 p.m. I did not get my blood transfusion until 2 a.m. I sat in the emergency room for seven hours, crying and wiggling around in pain. I feel like if I would of got seen at the hospital quicker, I would not have bled internally as much and would not of needed as much plasma and have a quicker recovery time.

I am on so many committees and with the primary goal of making Hemophilia Care better and obviously this goal is not being met.

So now I am in emergency, my nurse comes in to give me some morphine for pain, she pulls out a syringe and inserts it into my IV before she pushes the morphine in, she notices that its the wrong one so she takes it out, leaves the room and returns with another one. She puts in into my IV and before she insert it I look and notice the name on it says "Tanya" so I say I'm not Tanya, she says oops, removes the syringe and returns with the third one which finally says Ryanne Radford. I get the medication and start feeling a bit of relief from the pain. I look up at Zane and he is just horrified when he questions the nurse she says "it's hard to keep everyone straight." Now I don't know what your feelings about our health care system is like, maybe you think it's great because it's Free or at least better than other countries but in my opinion it's not good enough.

A few days later I have another mishap. My nurse comes in and hangs a bag of what I thought and what was suppose to be Benedryl. I get benedryl before each blood transfusion because I have had serious life threatening reactions to plasma. I am beginning to feel very drowsy and and I feel different than I did all the other times so I pull my IV poll in closer and read the bag and it says GRAVOL not BENADRYL. My nurse comes in and says that an error was made and now shes gonna give me my benadryl so leaves. I am so upset so I stop my IV and page the nurse. I tell her that I am not proceeding until I talk to a doctor and the charge nurse. She starts the IV up again and leaves. I stop the IV and wait for her to come back she comes back and says to me you have to stop touching the IV machine you are not trained to use it and I'm thinking I'm not trained? you just gave me the wrong medication!

Anyways I politely say look I've been doing this a long time, I want a new nurse and I want to see a doctor. The worst part about this situation is not the fact that I got gravol because that part is not a huge deal but the bad part is that I was at risk for having a reaction because I didn't get my benedryl before hand.

Anyways my point is this, is this acceptable? As a Hemophiliac as a Canadian as a human being, I don't think that this is something we should put up with.

What I would like to know from my readers (I hope you are out there) What should I do? Should I file a formal complaint? Should I keep my mouth shut? Honestly, after everything I've been through I don't know how I can let this go.

Thank God i found u

2011-08-19T21:58:00.000-07:00

So, I have to say there is something peaceful about the hospital at night. The sound of my roomates snoring to lull me to sleep, my IV pump doubling as a night light and the running water sound soothing me from the oxygen mask on the patient next to me. Not to mention the three different containers of urine that are sitting on the bathroom floor which make my stomach turn everytime I go in there and I don't even
Need to tell you what it smells like
It here. It's been very hard over the past few days but it was nice to see Zane and Dad in my room today after I awoke from
My drug induced nap! They have always been so
Supportive of me through everything, even when I phone them twonor three times a day saying I'm plannng on escaping from the hospital. I am grateful for so many things in my life bur lately I feel like my life is one big medical episode and I'm scrambling in between to
Have a life for myself. On Wednesday when I was in emergency the man next to me who was suffering from a bowel obstruction cried out in pain I wish I was never born and I thought to myself I hear ya buddy. It's hard to be in intense pain for several hours it starts to mess with your head. Either way, I was born and all I can do is take it one day at a time!

L

Test

2011-08-19T12:26:00.000-07:00

So I think when you go to the hospital they try to torture you as much as possible until you leave! I honestly think that's the action plan for the hospital! I came in on Wednesday and since then I have had 12 units of blood, 4 bags of benedryl, 5 ivs, and 6 needles for blood work. If that's not enough to upset you my nurse comes in to tell me I'm moving so she moves me into this too
With two lady's and some man. I don't feel comfortable and I know I'm about to freak out so I page my nurse this lady comes in and is like who are you? You aren't suppose to be here? So
I am going to get my transfusions every day but go home in between!

Mass

2011-08-18T20:33:00.002-07:00

So, I came to the foothills hospital last night around 7 pm with severe abdominal pain. After about 3 hours of crying and wailing I received morphine which i didn't find was helping very much. After my four units of fresh frozen plasma I started to feel a bit better! Today a ct scan revealed a mass in my stomach which is mist likely fluid or blood. I'm still in a lot of pain and I feel really guilty for missing work. I also feel bad for Zane because I know watching me in so much pain is hard on him too! He took the day off with me to get some clothes for me and all that stuff. My friends cheryl and Kim also came to visit and bought me the most beautiful bouquet of flowers! My morphine is kicking in
So I can't write much more but I am in a lot of pain, I'm tired and I frustrated that my life is like this.

Hemophilia Today

2011-08-12T11:16:00.000-07:00

So, the lastest issue of Hemophilia Today came out so I thought I would take this opportunity to to encourage you to read it. It's a great publication and I'm not just saying that because my picture is in it three times! When you get a minute take a look at http://www.hemophilia.ca/files/HT%20August%202011%20-%20final%20web.pdf.

Kidney Trouble

2011-08-09T19:39:00.000-07:00

So, I've been having some kidney problems over the past week or so. After taking Antibiotics for almost a week I found myself in a lot of pain on Thursday evening so I went to the emergency room which I think really speaks to the amount of pain I was in because I only go to the emergency room when I am over come with pain. Zane and I sat in the waiting room for about two hours then sat in the triage room, then back to the waiting room then I got a bed and waited there. After about 4 hours Zane went home and went to bed and I decided it was a good a time as any to have an emotional break down. I cosed my curtain and cried tobreak my heart. I cried because I was in pain and frustrated with the medical system, I cried because of what I have to put Zane through and I cried because I miss Charlie.

Right in the middle of my break down my nurse came and pumped me full of Fentayl and a porter whisked me away to get a CT scan.

There's nothing worse then being upset and then having to face people. They looked a me as I wheeled by in the stretcher probably thinking, what the hell is wrong with her? or that is the most black makeup streaked across someones face I have ever saw.

Anyways after a few hours of waiting the doctor poked his head in and told me that the CT scan showed not only that I had a kidney infection but also kidney stones.

I don't know what to say, I wasn't shocked I guess. The infection will pass, but I'm now thinking about whats to be done with the stones?

I hear they can laser them to make them smaller making them easier to pass, however I've talked to some other Hemophiliacs who told me about how that caused them a lot of bleeding. So I guess in the grand scheme of things it's not a big deal but I just feel like it's one more thing for me to worry about like am i going to have a bleed? am I going to have a gallstone attack? will the kidney stones cause me any problems? It'sjust really frustrating. But I guess all we can do is hope for the best and pray for good health!

Kidney Infection

2011-08-04T13:43:00.000-07:00

So, I thought I would take a minute and write about my Kidney Infection. Saturday night I started to feel like I was having symptoms of a Urinary Tract Infection so I tested my urine and it tested positive for Blood and Leukocytes. I began taking antibiotics and started to feel a bit better. Monday night I started to feel a little sick and began throwing up on Tuesday. After visit the doctor on Wednesday she told me that I in fact had a Kidney Infection which can be very serious if left untreated. She prescribed stronger antibiotics and told me to drink lots of fluids. The thing about a kidney infection is that it can become serious so if you are experiencing any of the following symptoms be sure to see a doctor right away, frequent urination, pain when urinating, pain in groin, pain in lower back, cold chills, sweats, stomach pain. I will be on antibiotics for the next 10 days so hopefully by then I will be feeling 100%. Until then I will complain and drink my lemon water and cranberry juice!

I Spoke Too Soon

2011-07-27T18:57:00.000-07:00

Marathon

2011-07-25T17:28:00.000-07:00

Hemaware Article

2011-07-23T21:09:00.000-07:00

So, Hemaware recently wrote a wonderful article about how the internet is making it easy for Hemophiliacs to keep in contact, learn about new treatments and provide emotional support. I was happy to do the interview and very glad to see that my blog is doing some good!

Susan Scroggins didn’t know which was worse: that both her children had been diagnosed with type 1 von Willebrand disease (VWD), or the dearth of support and information for families living with VWD in her area. It was December 2010, and she had just spent the past several weeks watching her 12-year-old son and 13-year-old daughter bleed uncontrollably after having their tonsils removed. When Scroggins was not at work or caring for them, she fretfully combed the Internet for any nugget of information that could soothe her anxieties. She wondered if her son could still play sports and whether her daughter could still attend church camp. Overall, she wondered if her children could lead normal lives.

“I was looking for anything that would say, ‘This is the best physician to treat the disease, this is who you can call with a question or if you just need a shoulder to lean on, and here are some other people dealing with the same thing nearby,’” says Scroggins, 40, of Center Ridge, Arkansas. On New Year’s Eve 2010, she typed this first entry in her new blog, vWD in Arkansas:

Not much time, but wanted to feel like I was making some sort of progress in my attempt to make sense of this craziness I call life right now. The gist of it is that we’re a simple country family living a complex life right now. The recent diagnosis of von Willebrand Disease in R and D make things even more complicated.

The blog was intended to be Scroggins’ personal therapy and a way to share information she came across. She opened a Twitter account on New Year’s Day and posted her first entry. Two hours later, a young woman from Maryland who had VWD requested to follow her on Twitter. Scroggins was amazed at the quick response. Through their conversations, the woman gave Scroggins a host of information about support programs and treatment options to ask her hemophilia treatment center (HTC) about.

Blue Jean Images/Glow ImagesIndividual blogs, discussion forums, Twitter, Facebook and YouTube are increasingly becoming the primary link connecting members of the bleeding disorders community. The upward trend in social media usage reflects what’s going on in the general population. A survey of more than 5,000 Americans found that nearly one-fourth are active on a social networking site and 7% are blogging, according to a November 2009 study in the Journal of Medical Internet Research. These online resources function like a virtual support group for people with bleeding disorders—only better. When Scroggins has a question, even if it’s in the middle of the night, all she has to do is log on.

Support in Real Time

A YouTube search on “hemophilia” pulls up nearly 1,200 videos, uploaded over the past four years. Most of them are personal stories; others are educational videos or homemade public service announcements soliciting political and financial support. The most-viewed videos have been played more than 100,000 times.

Discussion forums are generally hosted by a particular organization. Inhibitorsupport.org, hosted by the Haemophilia Society of the United Kingdom, is for people with hemophilia and inhibitors. Los-bleedos.net, hosted by the Danish Haemophilia Society, is for young people with bleeding disorders worldwide. Topics address the effect of bleeding disorders on anything from scuba diving to intimate relationships. Members can remain anonymous or, as with social networking sites, create profiles.

National Hemophilia Foundation (NHF) chapters are boosting their social media presence to educate and keep funders engaged. This year the Colorado Chapter launched a weekly blog, a Facebook cause page, and Twitter and YouTube accounts. “This will never replace one-on-one interaction, but it’s an entry point,” explains the chapter’s executive director, Emily Davis, MNM. “We have to let them know what’s going on in our organization.” To find out if your chapter is active on Twitter, look on its Web site or do a Web search for the chapter’s name and the term “Twitter.”

On Facebook, more than 4,600 people “like” NHF and receive regular updates on events and HemAware articles. NHF has more than 900 people and organizations following it on Twitter. Followers receive links notifying them of NHF events, HemAware articles and other online articles about the latest research and treatment, and about people living with bleeding disorders. NHF also retweets many of its followers’ blog posts, photos and comments about hemophilia and VWD. Since hemaware.org was launched in March 2010, NHF has started three blogs on the site, all written by people living with bleeding disorders. (See “HemAware Bloggers.”)

Scroggins began following the HemAware blogs and several others soon after she started her own. “They understand. They’ve been there,” Scroggins says. “If I hadn’t found these people online, I’d probably be bald from the stress.”

Within three months of creating her blog, Scroggins had nearly 70 Twitter followers. She posts a new blog entry about every five to 10 days chronicling her family’s journey. She has posted on the sleepless nights, the frequent hematology appointments, and the anxiety and helplessness she sometimes feels watching her kids go through the challenges of having a bleeding disorder. A recent entry contained a poem about a pair of painful shoes that no one can relate to unless you walk in them, a metaphor about life with a bleeding disorder. Scroggins found the poem in a post by Ryan Rotenberry, LPN, 42, a blogger she considers a buddy, though they’ve never spoken.

From Needing Help to Giving It

Before blogging for HemAware, Rotenberry, of Forestville, New York, began a blog called Hemo Hijinks, after having similiar feelings of isolation that motivated Scroggins to blog. Working as a nurse, he often had to call in sick because of bleeds from moderate hemophilia A. Eventually, Rotenberry’s bleeds became so frequent he had to take disability leave.

Knowing no one else in his community with a bleeding disorder, Rotenberry looked for support online. His first stop was mybloodbrothers.com, a social networking site that recently migrated to a Facebook page. There, he met a woman who pointed him to resources that could help with insurance co-payments, out-of-pocket medical expenses and legal issues related to disability. The two remain close friends. Rotenberry also met Matt Stinger. Though they were 15 years apart in age, they related to each other as nurses with hemophilia. Stinger has severe hemophilia A. “I was having bleeds at work, too, having to call off sick or stop working,” says Stinger, a nurse at a pediatric emergency department in Philadelphia. “We were able to support each other through all that.”

Rotenberry’s and Stinger’s friendship progressed to Facebook and Twitter and then to texting each other. “Matt was supportive during a time when my employer wasn’t and nonhemophilia friends had a hard time understanding,” Rotenberry says. In November 2010, they met face-to-face in New York City. “He’s like my little brother from another mother,” he says.

As Rotenberry continued to blog and tweet about his experiences, he noticed a shift. Parents of newly diagnosed children and older children with bleeding disorders, as well as adults, began coming to him online, desperate for guidance. “I realized that my place in this community is not what I thought it was,” Rotenberry says. “I came looking for support, but now I’m more of a mentor.” Since launching the Hemo Hijinks blog in October 2010, Rotenberry’s attracted 391 regular followers to his two Twitter accounts. Of the 500 friends he has on Facebook, he estimates that about one-fifth are dealing with bleeding disorders. In February 2011, Rotenberry was invited to launch InFuzed, a spinoff of the Hemo Hijinks blog, on the HemAware Web site.

Friends, Followers and Foes

Although Rotenberry shares his experiences living with a bleeding disorder, he agrees with NHF’s warning statement that people should not take social media information as medical advice. “I’m not your doctor, and I’m not there treating you at that moment,” Rotenberry says. “What works for one person may not work for everyone else.” Any medical information or treatment advice found online should first be discussed with your HTC staff or physician.

NHF also warns social media users to be cautious of the personal medical information they divulge online. Users should update their Facebook privacy settings so only their friends can view their page. They should consider anything that is posted to be public information, meaning any search of their name could reveal social media and blog postings. Insurers, employers, colleagues and others could potentially use this information to discriminate or exploit.

After answering an ostensibly innocent Facebook request, Rotenberry found that his personal information was being used by a salesperson to harass people for sales. “Don’t just assume that because they claim to be in the bleeding disorders community they should be your friend,” Rotenberry says. Further, be selective about what you share. (See “Learn More.”)

Connecting for a Cause

Social media can also be an extension of the connection people make at hemophilia summer camps, NHF’s Annual Meetings and chapter events. Anthony Romeo, 27, an actor in New York City with moderate hemophilia A, was planning to attend NHF’s Annual Meeting in November 2010 in New Orleans. Instead, he wound up at a local hospital after he sustained a head injury. “If you ever wanna feel unimportant, just go to the ER... seriously. Still here. Waiting... Grr. Argh,” he tweeted from the waiting room.

Instantly, responses came in from people at the conference, empathizing with him and updating him on what was happening. “As people with bleeding disorders, we are a small community, and we have to make our voices heard, but we haven’t had a venue to do that,” Romeo says. “Social media has enabled it.” He regularly tweets Rotenberry and Stinger.

Social networking is especially helpful for people who live in small towns or rural areas. Romeo grew up in rural Pennsylvania, 45 minutes from Scranton and an hour bus ride from his elementary school. Few of his classmates or neighbors understood his bleeding disorder or knew why he wore protective padding and a helmet. Today, families in rural communities can use social networking to connect with people who understand. They now have unprecedented access to treatment information that often took longer to trickle into smaller towns.

Social media has also allowed awareness of bleeding disorders to go global. Ryanne Radford, 28, of Calgary, Alberta, Canada, started her blog, Hemophilia Is for Girls, to raise awareness about the unique struggles of women with bleeding disorders. Radford has severe factor V deficiency, an extremely rare bleeding disorder with fewer than 200 known cases worldwide. A few months after the blog’s launch in February 2010, Radford began receiving messages from people around the world, including this one from a young man in India with severe hemophilia A:

…I have a family history of hemophilia and throughout my life it has caused me many problems. The medicine used to treat a bleeding episode is very expensive and hard to get. The Hemophilia Treatment Centre is far away and is hard for me to get to. I would love to improve my quality of life and would like to do so by opening my own business.

Radford receives similar messages from 15 Indian Facebook friends and Twitter followers. Their plight moved her to use her blog and Twitter postings to start a fundraising campaign for their medical expenses.

The shared feelings of empathy and responsibility are prompting more NHF chapters and individuals with bleeding disorders to form virtual bonds with people in other states, communities and even countries. In the digital age, physical distance is irrelevant. Understanding and helping are what count. Radford casually talks about her Indian blog readers and Twitter followers as if they had just spent time together. “I’ve never met my friends in India, but I think this cause has become close to my heart because I ‘talk’ to them every day.”

http://www.hemaware.org/story/digital-connections

Good Night Sweet Prince

2011-07-19T21:32:00.000-07:00

So, today marks one year since Charlie has passed away. I have had many one year milestones in my life. One year anniversary, one year without a bleed, but this one year mark makes me depressed. I miss Charlie every day. The fact that hes been gone for a year makes me feel like I need to do something or something has to happen for me to remember him or hang on to him. The hardest part for me to accept is that there is nothing I can do about it. I sent my mom flowers to let her know I was thinking of her but I know it will never be enough to make up for the fact that she lost her best friend. I have received a lot of support today, my wonderful co worker Danielle bought me flowers and a little teddy bear and a beautiful card. It was such a beautiful thing for her to do and it made me feel a lot better. My friends Cheryl and Kim came out for supper with me and gave me a card and a big bouquet of flowers It really helped me take my mind off of it and it helped to know that they cared so much and that they loved Charlie too. I was overwhelmed with how thoughtful and caring my friends are. Zane took me out for supper and listened to me cry for about the one millionth time since Charlie passed away.The more I thought about Charlie all day the more I thought about how he always did what he wanted to do. He ate what he wanted, drank what he wanted and he worked hard and played hard. We are almost complete opposites in that respect as I spend almost all my time watching what I eat, drink and do. I think having someone like Charlie in my life helped me see the importance of having fun and throwing caution to the wind. At the end of the day I know I should be happy that I had 20 years with one of the nicest, thoughtful caring people I have ever met, but a part of me just wants to have him back.

The Royal Couple in Calgary!

2011-07-05T20:52:00.000-07:00

So, as you may know the Duke and Duchess of Cambridge William and Kate are going to be in Calgary July 7th and 8th. As you may know, the Royal Family has a family history of Hemophilia. Ever since I heard they were coming I prayed there was some way I could meet them and talk to them about Hemophilia but it seems to be nearly impossible to book an appointment with William and Kate. While they are in Calgary I would be lucky to even lay eyes on them. It would be an honour to meet them but my reasoning for wanting to meet them so badly is they fact that they have so much influence in the world and could do so much for Hemophilia Care around the world! I have this wonderful pair of people in my sights because they have a family history of Hemophilia, although it is way way way back in their history I hope they have some compassion for this cause. Besides the link to Hemophilia I think they are just an absolutely beautiful couple and I just loved watching their wedding. I have it taped and sometimes watch it if I am feeling sad. I remember my mom telling me about how she loved watching Princess Diana get married and I glad I got to watch my very own princess get married in my lifetime.
Either way I will keep on dreaming big when it comes to helping others living with Hemophilia. In the meantime if you see William and Kate please tell them I would love to meet with them to discuss Hemophilia Care.

The Happy Former Hintonite!

2011-07-04T14:28:00.000-07:00

So, I spent the long weekend in Hinton, Alberta. Hinton is just a few hours away from Calgary so we decided to head out there to visit with Zane's family. Zane and I lived in Hinton for three years before moving to Calgary and I must say going back there is a lot like going back home. The people are kind and friendly and the scenery is just beautiful. We arrived on Friday July 1st, just in time for Hinton's Fohn Festival, a multicultural Canada Celebration with food, fun and entertainment. I got to see some old friends and made a few new ones. It was so nice catching up with everyone and so good to see how the Fohn Festival has grown over the years as I was in Hinton for the very one. I was also very proud to see the new Hinton Voice, started up by some of my friends and former co workers.
We took the park way back to Calgary through Jasper National Park and Banff National Park and saw some of the most beautiful mountains in the world as well as bears and goats.
While were were in Hinton we got to spend some quality time with Zane's Dad, Step mom and two little sisters, they are so kind and welcoming to me that sometimes I honestly forget that they are Zane's family and not mine.
We are now safe and sound in Calgary and although it is nice to be back in the big city its nice to know we can also head back to Hinton anytime where we have so many good friends and wonderful memories.

O Canada!

2011-06-30T11:52:00.001-07:00

So, tomorrow is Canada Day. I think as Canadians we appreciate our country. I have never really thought about it very much to be honest. As a child I loved Canada day because we would get a day off and get to watch fireworks. But as an adult I realize that being Canadian means much more to me than just a holiday. Being an Hemophiliac, being a Canadian means that I have FREE access to some of the best treatment in the world. I truly believe that if I were born in any other country I would not have the quality of life I have today. At the moment I can go to the hospital anytime night or day and not have to think about how much it will cost. I can’t imagine having to pick between health care or a mortgage payment, or worse yet, not even having access to treatment in the first place. In some countries Hemophiliacs do not have enough money to pay for their treatment and thus have to continue bleeding until it eventually stops on its own. This practice is very painful and can cause long term muscle, nerve and joint damage. In some countries patients can’t even afford the cost of transportation to a Hemophilia Treatment Centre and when they get there the centre may not even have product available for them an if they do the patients often can’t afford it. The fact that this is going on in the world breaks my heart. It truly bothers me that I while other Hemophiliacs are sitting in their homes slowly bleeding internally praying for it stop. In my mind this just shouldn’t be. I’ve mentioned this program before and I can’t stress enough how important it is for us to donate to things like this. Check out Save One Life http://www.saveonelife.net/ a program dedicated to helping people with Hemophilia. Wherever you are from there is always someone else in the world who could use a helping hand so while your celebrating Canada Day on July 1^st or the 4^th of July in the US take a minute to click on Save One Life and help someone with Hemophilia today!

Hope for Hemophilia

2011-06-29T15:36:00.000-07:00

So, the following article is all about how gene therapy has the potential to cure Hemophilia. When I read things like this my first reaction is to get excited. I can't imagine how wonderful my life would be without Hemophilia the prospect is just so exciting to me that I don't even let myself believe that a cure is possible. Then the critical side of me kicks in and I think that something like this is too good to be true. Read for yourself and make your own opinion but I am going to allow myself a few minutes to imagine a world without Hemophilia.

http://blogs.discovermagazine.com/80beats/2011/06/27/dna-snipping-enzymes-cure-hemophilia-in-mice/

What’s the News: Hemophilia is perhaps best known as a disease of nineteenth-century royalty (specifically, of the oft-intermarried Hapsburgs), but it has evaded our efforts at a cure for thousands of years. And its effects are gruesome: mutations in the gene for a crucial clotting factor mean that victims can rapidly bleed to death from even small cuts.

Now, researchers working with hemophiliac mice have demonstrated a simple and apparently safe technique to swap in a functioning gene, giving hope for a future respite for sufferers of the disease.

How the Heck:

Gene therapy usually involves removing cells from a patient, repairing their damaged genes in a Petri dish, reinserting them, and hoping that they’ll take, a fraught, expensive process. These researchers performed the whole procedure within their mouse subjects, sending in enzymes to snip out the defective gene and a virus carrying a normal gene to replace it.

The mice had been engineered to carry a human gene for hemophilia, and the enzymes and virus had been specifically engineered as well: the enzymes would cut only certain sequences of DNA, patterns that were known to appear on either side of the defective gene, and the virus, which naturally infects the liver cells where the clotting factor is made, would swap in an unmutated gene, instead of the viral genes it would carry in nature.

The treated mice bled for a significantly shorter time than untreated mice and made 3-7% of the normal level of the clotting factor, a level that would result in only mild bleeding in humans. What’s more, even after part of the liver had been removed and allowed to regenerate, the mice continued to produce clotting factor, a sign that the modified cells were passing the normal gene down to their daughter cells.

What’s the Context:
Because the genetic cause of hemophilia is clear, it’s a prime candidate for gene therapy, the process of altering damaged or abnormal DNA to restore normal function.

Gene therapy has shown promise in the lab for treating HIV, Parkinson’s, and even color blindness. Despite early, serious setbacks for gene therapy, clinical trials are now under way for treating a wide variety of genetic diseases.

The type of hemophilia treated here happens to be hemophilia B, which accounts for about 20% cases. But because the therapy replaces the entire gene, it seems likely it would work for the more common hemophilia A as well, which is a mutation in another clotting factor.

Not So Fast:
A serious concern about gene therapy is that enzymes could clip healthy parts of the genome, leading to cancer and other diseases or reactions—researchers have proceeded with utmost caution since children receiving gene therapy for X-linked severe combined immunodeficiency (also known as bubble boy syndrome) developed leukemia as a result of their treatment. One of the reasons scientists perform gene therapy in a Petri dish is so they can check for this by sequencing the genomes of the cells they plan to reinject, as well as watch them for signs of abnormality before putting them back in their patients.

Obviously, it would be much easier if therapy that bypassed this process could be relied upon to not harm the patient, and the fact that the mice have experienced no ill effects over the eight-month period since the treatment is a good sign, as is the fact that the enzymes seem to have snipped only one site beyond than their intended target. But this is a known danger with gene therapy, and researchers will have to show that they can prove the treatment doesn’t cause damage to the rest of the genome.

The Future Holds: This finding is just the first step on a long road to developing a genetic treatment for hemophilia. But it’s a very tidy study, and should prompt much future research into gene therapy.

Reference: Hojun Li, Virginia Haurigot, Yannick Doyon, Tianjian Li, Sunnie Y. Wong, Anand S. Bhagwat, Nirav Malani, Xavier M. Anguela, Rajiv Sharma, Lacramiora Ivanciu, Samuel L. Murphy, Jonathan D. Finn, Fayaz R. Khazi, Shangzhen Zhou, David E. Paschon, Edward J. Rebar, Frederic D. Bushman, Philip D. Gregory, Michael C. Holmes, Katherine A. High. In vivo genome editing restores haemostasis in a mouse model of haemophilia. Nature, 2011; DOI: 10.1038/nature10177.

June 27th, 2011 2:44 PM Tags: gene therapy, Genetic Engineering, hemophilia, Nature (journal)

Travel and Hemophilia

2011-06-27T15:23:00.000-07:00

So, November 4th my sister is getting married in Las Vegas! Zane and I are planning to make the trip down for the wedding and we are really looking forward to it. The only problem for me is I feel like Hemophilia and Travel are just two things that don't go together. There is some debate however as to whether or not I am just letting my Hemophilia "control" me and letting it ruin my travelling ambitions or if i am just being responsible. I have heard great stories about Hemophiliacs trekking across the globe and I have also heard many horror stories of Hemophiliacs who ended up in life threatening situations because they were away from home and without proper treatment. For my trip in November I plan on having a letter from my doctor explaining my situation, I will be phoning the hospital in Las Vegas a head of time and telling them about myself. I will also be bringing my factor first card with me, my medic alert bracelet and I will be getting travellers insurance. I must admit I am nervous about it since it is my first time leaving the country but I think it will be a lot of fun. I am so excited to watch my sister get married and I am very glad I will get to be there! Hemophilia or no Hemophilia.

Father's Day

2011-06-20T18:38:00.000-07:00

So, this time last year I was in the hospital with my darling Charlie. It was father's day so I bought him a cook book and a baseball cap only to turn around and have to pack it up into a suitcase and bring it back to Stephenville, without Charlie. It took moms weeks before she could unpack his suitcase from the hospital. It stayed at the bottom of the stairs and I would cry every time I would walk over it to do the laundry. I came back to Calgary hoping to get away from all the reminders of Charlie but being away from most of my family just seemed to make it worse. I had a really hard time unpacking every time I would take an item out of my suitcase it would remind me of the six weeks mom and I spent in St. John's running back and forth from the mall to the hospital trying to distract ourselves from the fact that one of the people we loved most in the whole world was seriously ill. I spent most of the day in bed yesterday hoping it would pass by while I was sleeping. I've always hated father's day in a lot of ways. My parents divorced when I was 5 so I spend most Father's Days with my momma. Now I live in Calgary and I am finally a lot closer to my Dad. Part of me is sad without Charlie and part of me is glad a I get to spend it with my Dad.

If you don't have something intelligent or nice to say why say anything at all?

2011-06-18T10:09:00.000-07:00

So, as you know I get blood transfusions on a regular basis and thus I have a huge interest in Canadian Blood Services and it's policies and procedures.
The following article is discussing the various things Canadian Blood Services is exploring to accommodate donors who do not speak English. I find this article to be very interesting but what is even more interesting is the comments from readers that follow this article stating that CBS is racist. I think if you aren't receiving blood or you don't understand the reasoning behind certain rules and regulations you can't just call is racist and move on.
Sometimes people just don't know enough about the subject and shouldn't be commenting on it. I'll all for freedom of speech but if you don't have something intelligent or nice to say, why say anything at all?

Blood agency faces barriers in ethnic donor search

CBC News Posted: Jun 17, 2011 9:37 AM ET Last Updated: Jun 17, 2011 4:29 PM ET Read 63 comments63 Back to accessibility links

While visible minorities make up 20 per cent of the population, only seven per cent of blood donors identify themselves that way, the agency said.

As part of National Blood Donor Week, Canadian Blood Services said it wants donors to better reflect the Chinese, South Asian and Filipino communities in Toronto and Vancouver.

In some rare instances, patients need a closer match than basic blood groups, which is more likely to succeed when the donor belongs to the same ethnic background.

But answering yes to one of several questions may mean a person is ineligible to donate blood, such as:

Not being able to speak English or French.

Visiting the United Kingdom, France or elsewhere in Europe for three months or more from 1980 to 1996.

Visiting Saudi Arabia for six months or more between 1980 and 1996.

Having malaria.

People who've visited a country that is considered in a malaria risk-zone are excluded for up to a year.

First-time blood donor Danny Cen says a language barrier does prevent some Chinese from giving. CBC

The language barrier does prevent some Chinese from giving blood, said first-time donor Danny Cen in Toronto.

"Some actually want to donate but then they don't know how to speak English," said Cen.

Translation option

The agency hopes to start providing translators for donors who speak Cantonese and Punjabi, said Tony Steed, director of marketing and recruitment for Canadian Blood Services in Ottawa.

Potential donors are not allowed to bring along their own translator for what Health Canada calls privacy reasons. CBS is applying to the regulator to allow Punjabi translators in Toronto and Cantonese translators in Vancouver.

"We are exploring the use of translators, for example, we have sign language," interpreters, Steed said.

Tim Wilson wanted to donate for the first time after seeing ads, but travelling to France 20 years ago meant he was turned away.

"I'm scared of needles, but I thought, 'I'm just going to deal with it,'" Wilson said. "It's really a shame, I would have liked to have donated."

Need for blood

Half of Canadian adults are eligible to donate blood but only one in 60 has.

Cardiovascular surgery can take five units of blood that would require five donors. Trauma from a car collision may require 50 units.

Source: Canadian Blood Services

Jake Hendren, 14, of Whitby, Ont., discovered he had a bleeding disorder called idiopathic thrombocytopenic purpura, or ITP, last July after he was playing football and developed black bruises everywhere within 45 minutes, said his mother, Jane Hendren.

Since then, Jake has needed nine infusions of platelets.

"It has been a rough year, and every time we have walked out of the hospital with confidence that my son is not getting any diseases," said Jane Hendren, who welcomes the criteria.

"They have restrictions for a reason, and the reason is to protect the safety of the patients like my son."

The blood agency's campaign aims to increase its base to 500,000 active blood donors and to recruit 100,000 new ones each year across Canada by 2015.

The Risks of Being Obese

2011-06-14T20:39:00.000-07:00

This is what will happen if I do not loose weight. It's scary. I am hoping that by cutting and pasting this information into this post I will automatically start to loose weight. That's how it works right? Either way, this information is important for everyone to know.

1. Increased blood pressure (Hypertension)

50% of the people who have high blood pressure are obese. The most common accompanying disease of obesity is high blood pressure (hypertension). The NHANES-II study revealed that the occurrence of high blood pressure was three times higher in a group of 20-75 year olds with a BMI > 27 and six times higher with the 20-45 year old group. Other studies showed similar results. Weight loss usually leads to a decrease in the blood pressure values.

2. Type 2 Diabetes mellitus

80 % of diabetics are obese. There are numerous studies which reveal the connection between obesity and type 2 diabetes mellitus. The risk of getting diabetes is already increased if your BMI is in the higher normal weight range. The risk of developing diabetes is higher for those with the "apple type" or upper body fat distribution than with the "pear type" or lower body fat distribution. In addition to this, the risk of developing diabetes increases with the duration of obesity.

3. Fat metabolic disorders such as hyperlipidaemia (too many lipids in the blood) and dyslipidemia (disorder of the blood lipids levels)

50 % of people with fat metabolism disorders are obese. Most obese patients generally have an increase in the triglyceride levels in the blood which leads to the lowering of the HDL-cholesterol level. The total cholesterol and the LDL-cholesterol do not increase as dramatically as the triglyceride levels. LDL-cholesterol can become particularly problematic with abdominally obese patients (patients with "apple shaped" obesity).

4. Coronary heart disease, heart failure

The risk of getting a heart attack or dying from a heart attack increases the higher the BMI. Heart failure is one of the more common problems with obese patients from which many die from. The risk of getting cardiovascular illnesses is dependant on how long the person has been overweight. The development of heart failure is increased if the patient is also suffering from high blood pressure and type 2 diabetes mellitus.

5. Stroke

The risk of getting a stroke likewise increases the higher the BMI. For women, the risk of getting a stroke is 75% higher with a BMI >27 and 137% higher with a BMI of >32 than women who have a BMI in the normal range.

6. Mortality (death rate)

A BMI > 25 increases the mortality rate. The increase in the death rate is not so significant up to a BMI of 30. However, a BMI > 30 increases the death rate considerably, regardless of the causes. People affected the most are those with cardiovascular illnesses. They have a 50-100% higher death rate than people with a BMI between 20 and 25.

7. Sleep apnoea syndrome (cessation of breathing during sleep)

One of the main risk factors of being overweight is the development of the sleep apnoea syndrome. About two-thirds of all sleep apnoea syndrome patients are obese.

8. Gout

An increasing body weight concurrently increases the risk of developing gout. Many studies have shown that there is an interaction between the weight and the uric acid production in the blood. The waist/hip circumference correlates more with the increase of the uric acid concentration in the serum, than it does with the weight.

9. Gall bladder disorder

One of the risk factors of obesity is the increased risk of developing gall stones.

10. Orthopaedic complications

Obesity promotes arthritis and back pain as a result of the excessive strain on the spine and the lower extremities (thigh, leg, foot and knee cap).

11. Psychosocial complications

Psychosocial complications are usually caused by the negative societal opinions towards being overweight. As a result of the youth and fitness orientation in the last few decades the view towards obese people has gotten worse. The consequence was that discrimination towards overweight people increased. People who are overweight often do not fit into social circles; they are regarded as unfriendly and less attractive. It has been proven that weight also has an impact on the average income and career opportunities. Overweight people are usually described as "weak-minded", clumsy" and "ugly".

Walk to Cure Diabetes

2011-06-04T09:45:00.000-07:00

So, as you know I had a lot of family support last weekend at Rendez Vous. Looking around the room at seeing my family there to support made me feel great and it made me realize that although I can't cure Hemophilia or any disease for that matter all by myself I can support those who are trying to make the world a better place.
My friend Michelle is participating in a Walk to help support research for diabetes. Please take a moment to read Michelle's story I know it will inspire you to participate in the walk or even give a donation to the cause.
I am planning on participating because Michelle is one of the most kind and caring people I have ever met in my life. She was my sponsor when I decided to become a catholic about two years ago. Since then she has been such a wonderful friend to me and I'm so happy that there is now a way for me to be supportive of her.

Hi everyone!

That was the JDRF/Telus Walk to Cure Diabetes slogan when we participated in this event two years ago: We Are Walking for Max. This year we are again participating in the Walk, and are writing to you now to ask for your support.

The Juvenile Diabetes Research Foundation (JDRF) is a charitable organization which funds research into the prevention, management, and cure of Type 1 Diabetes. As many of you know, our son, Max has had Type 1 Diabetes for almost three years now. JDRF has been a huge positive force in our lives during that time, and we are confident that when a cure is found, it will be because of the research projects supported by JDRF. And when that happens, we want to know that we have done our part to make that a reality.

So we are participating in the Walk on June 12, 2011 (12 days from now) and are asking again for your support, in whatever way you are able. For those of you who would like to contribute your time, you are welcome to join us in Stanley Park in Calgary on Walk day (please contact us so that we can give you the hows and whens). For those of you who would like to financially support JDRF's work, you can click on the "Support Me" button on our Walk page (see link below). And for those of you who would like to support us in prayer, we would be grateful for prayers for Max and Gemma, as well as for advancements in the area of diabetes research.

We invite you to visit our personal Telus Walk page for more information about our family, the Walk and JDRF (click on the Support Me link below). We thank you all for everything (time, finances, and prayers) – we couldn't do this (the Walk, and also daily life) without you! -Michelle, Dean, Max and Gemma.
http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&eventID=1017&participantID=101249

Hope for HIV

2011-06-03T13:15:00.000-07:00

Rendez Vous 2011 By Jenny Ruklic

2011-05-30T17:10:00.000-07:00

So, I already talked about how I loved Rendez Vous 2011 but this blog is also about getting other peoples perspectives on things so the following post is by Jenny Ruklic my friend, Founder and President of Carter's Quest for a Cure, Hemophiliac Mom, Secretary for the Calgary Chapter of the Canadian Hemophilia Society, Parents Empowering Parents program facilitator and all around great person. If you would like to learn more about Jenny please visit http://cartersquest.weebly.com/.
Well to say that Rendez Vous was amazing would not be giving it the justice that it deserves. The weekend weather may have been dismal but the events on the inside of the Delta Hotel Calgary were amazing and inspirational.

This was my first time attending the Medical Symposium and the Events of Rendez Vous and was just glad that I had a guided tour through the events with a pro like Susan Anderson. I arrived Friday morning ready to meet new people and learn all that was offered. The sponsors had a fantastic room set up with the usual swag and new ideas and products that they are bring to the market. It was a room filled with great energy and excitement for the day’s events.

The Medical Symposium was held in the banquet room where an estimated attendance of 300 people. The Morning agenda was insightful and educational dealing with the popular topic of aging. Or as Dr. Karen Fruetel had put it the Silver Tsunami. For the population of our Bleeding community it was a real eye opener to see all the different things to think about. The afternoon’s events were geared towards Rare Inherited bleeding disorders where our very own Ryanne Radford sat on the Panel and explained to the full room what it has been like to live her life as a Factor 5 Hemophiliac. The insight that they all shared was great and it was hard not to be emotional with the Mother of the 15 year old boy who has the rare disorder of Factor XIII. The end topic of the Symposium was dealing with Mild Hemophilia and the struggles that they are having. Mild is a term that should be changed, as it does not give these people the justice that they deserve. They tend to suffer in silence as they may or may not bleed the same as a Severe. The medical teams across Canada are striving to change this, as well as make sure that our women that are carriers are also acknowledged. The Panel was a group of amazing young men and a mother all with the same goal, dealing with life as a member in the community with a Bleeding disorder.

The next day there were many meetings and gatherings of all the different aspects of the CHS. The Board of Directors met and continued to make decisions that will affect all of our chapters in the next year. The final part of the day ended with an amazing banquet filled with great food, drink, dancing and friends. Many people were awarded recognition awards. There was time set aside to remember all of the inspirational people that were unable to attend the event including Ken Poyser. The NAR and the SAR’s Carter’s Quest for a Cure were able to make a very impressive Donation to the Million Dollar Club. To say the weekend was great would not give it justice.

Rendez Vous 2013 will be held in Winnipeg Manitoba and we hope that we will see many of you there.

My First Video

2011-05-29T22:12:00.000-07:00

So, here is my 5 minute talk on what it is like to live with a rare bleeding disorder. You can watch it here http://www.youtube.com/watch?v=U6BfpOYtKs8 on youtube!

A wonderful night

2011-05-29T16:48:00.000-07:00

So, I have to say that Rendez Vous Calgary was a success! There were more than 340 participants including my Dad, Step mom, Mother in law, Zane and Zane's uncle! It was nice to have my family there with me I have to say, honestly, I think it was the best part of the whole weekend. I was involved in a panel discussion about living with a rare bleeding disorder. Although public speaking isn't my best quality I still really enjoyed it. I also got to meet a lot of really nice people who I will never forget. It was announced that the next Rendez Vous will take place in Winnipeg in 2013. I am already really looking forward to it. This experience also gave me the opportunity to talk about my blog which I really hope will grow to eventually include more followers and more posts from different perspectives. Over the next few days I hope to touch on a few of the highlights of the weekend, including biographies of some of our great volunteers and more about my favorite doctors.

Conference Presentation

2011-05-19T10:45:00.000-07:00

So, Rendez Vous Calgary is coming up in just over a week. I am really looking forward to it as I have been asked to speak at it this year. This conference takes place every two years in a different locations across Canada. I am really happy to be presenting the following talk to patients and health care practitioners.

I was born and raised in a small town in Newfoundland. It was there that I diagnosed with Severe Factor Five Hemophilia at seven months old. My diagnosis came about after I hit my head and developed a large hematoma on my head. It took a while for me to be diagnosed because I have no family history or Hemophilia. My mom and Dad are healthy and I have two healthy sisters and lots of healthy cousins. Over the past 28 years I have had bleeds into my joints and muscles but today I would like to talk about my most major bleeds. When I was twelve years old I started my period and began having lots of problems, it would not stop and I began loosing lots of blood. I began getting treated with 4 units of Fresh Frozen Plasma once a month which worked for a while until I developed ovarian cysts which ruptured and bled into my abdomen. This was a major bleed and I spent almost a whole year in the Janeway Children’s Hospital in St. John’s, NL. I was treated with more than 100 units of fresh frozen plasma. The doctors contemplated a hysterectomy but felt it was too aggressive. They tried several which imitated menopause and caused me to have some very interesting symptoms but I was still having some bleeding so I eventually tried the birth control pill which seem to work perfectly. My other major bleeds have been into my iliosopas muscle. I have bled into this muscle several times and each time it seems to quite a large bleed. My most recent ordeal was in December of 2009 I was admitted into the Foothills Hospital in Calgary for an iliosopsas bleed. I was told that the bleed was quite large and was on bed rest for an entire month. Needless to say it was the worst Christmas ever! But I did get lots of presents whether or not that was because I was in the hospital we will never know!

Since moving to Calgary I have been blessed with a great Hemophilia Treatment Centre and I would recommend to all Hemophiliacs that if they do not live in a city with an HTC they should move as it is a great resource. Over the years I have had great Hematologists including Dr. Jardine, Dr. Poon, Dr. Ritchie, Dr. Jackson, and Dr. Acktabodo and Dr. Goodyear.

The best and only treatment for me seems to be Fresh Frozen Plasma however I pray that they come out with a concentrate some day.

The best treatment I have received is just having a doctor who will listen to your concerns and treat you like a person and not just another number.

Currently I work full time as a Marketing Coordinator in Calgary. In my spare time I am volunteer with the Hemophilia Society, and have started a blog called HEMOPHILIA IS FOR GIRLS, So far I have 85 followers and have been featured in three American publications. My blog is most popular in Canada, USA and India.

Bleeds

2011-05-17T19:20:00.001-07:00

High Scool Reunion

2011-05-13T10:11:00.000-07:00

So, as I have mentioned before my 10 year High School Reunion is coming up! I was really looking forward to it and I have been on the planning committee for the past year however, since the reunion is in August and I just started a new job I don't think I will be able to make it.
I am disappointed but thats how it happens sometimes. Here is an article that appeared in my hometown Newspaper.

While they’ve gone their separate ways through the years, members of the Stephenville High class of 2001 are eager to reunite and catch up on what they’ve all been up to.

“We are really looking forward to this event,” said Ryanne Radford. “Some people we haven't seen in 10 years. It's going to be a lot of fun.”

Ms. Radford is helping to organize the reunion, along with Karla Benoit, Penny McIsaac and Laura Flynn.

About 50 graduates have confirmed their attendance, which is slated for Aug. 5 to 7 in Stephenville.

Events include a pub night, a dinner and dance, a barbeque and family games day, and a bonfire along the beach at Port Harmon.

Some people we haven't seen in 10 years. It's going to be a lot of fun.” - Ryanne Radford

“Three students from our graduation class have passed away so we are inviting their families to attend on their behalf,” noted Ms. Radford. “We are also inviting our former teachers to attend the (dinner and dance) event.”

The committee has set up a Facebook event page, where former classmates are conversing about the reunion.

“Wow! You guys are on the ball. This is awesome. If I can help out in any way, let me know,” wrote Allison Basha on the webpage.

Ms. Radford replied that she needed help with the pub event. By Chris Vaughn The Georgian. http://www.thegeorgian.ca/News/2011-05-11/article-2496452/Former-Stephenville-High-students-planning-reunion-/1

Mother's Day

2011-05-09T09:15:00.000-07:00

So, today is Mother's Day. I have mixed feelings today because well first of all I have the best mother in the world. I think there should be an extra special day for mother's of Hemophiliacs. It must of been so stressful for her to have sick child I can't even imagine. I have discovered that no matter how many cards and flowers and gifts I send her it will never be enough to thank her for all she has done for me over the years. As I child on special occasions I would always take something mom already owned and wrap it up for her she would always say how much she loved it and acted like it was the best gift she ever received.

Now I live in Calgary and I can't always get home to celebrate Mother's Day with my mom. I sent her a gift certificate and flowers but it wasn't the same. I really wish I could be closer to her but I know I can't live in Stephenville because of the medical system there. My health care is much better here in Calgary and the fact that I have to be so far away from my family makes me sometimes resent my Hemophilia.

Just when you thought this test couldn't get any worse!

2011-04-26T18:18:00.000-07:00

So, the only thing I hate more than getting a pap test is writing a blog post about it but I think it's important to talk about because Hemophiliacs need to take special precautions when it comes to this particular test. I have about a dozen of these tests in the past and have never had any problems until yesterday. I returned home from the doctor only to find the test caused me to have a lot of bleeding. Apparently this is not a regular occurrence and at the moment I am quite concerned. I am trying to get in to see my gynecologist and have contacted my hemophilia treatment center. I have spoke with other hemophiliacs and here is my best advice. Take cyclokapron (tranexamic acid) prior to the exam also, make sure you see a gynecologist who knows about your bleeding disorder and not a general practitioner. This is never a fun topic but ever since this happened to me I've been searching the Internet for answers and I can't find any so if you are a female Hemophiliac and you do not have a concentrate or recombinant factor then this post is for you! (That's like what 5 maybe 6 people in the world?)

Happy Anniversary!

2011-04-24T13:39:00.000-07:00

So today is my one year anniversary since Ive been a Catholic!
This time last year I completed a year course the become officially catholic. It was such a beautiful experience I must say. It was also nice to have my mother in law and brother in law and Zane with me in Church today. It took me a long time to become a catholic. I taught Sunday school, confirmation class and was in the choir. I also went to catholic school all growing up but I was baptized Anglican so while all the other students were doing their first confession and first communion I sat at the back of the church chatting with two other girls wondering what was going on. I always felt left out so I much say its nice to be a part of it all now.
I feel very blessed this Easter weekend because Zane's family has been around and we've been shopping, visiting and having delicious meals together. I hope everyone else is having a great Easter weekend.

Happy World Hemophilia Day!

2011-04-17T15:40:00.000-07:00

So, today is World Hemophilia Day! I am celebrating by going out out for supper with my wonderful friends. I've also been eating lots of red velvet cupcakes-I can't think of a better way to celebrate. In honour of Hemophilia day I recommend that you take a minute to check out the following links.

http://hemohijinks.com/2011/04/17/the-faces-of-hemophilia-world-hemophilia-day-2011/ This is an awesome blog.

Also, check out this video, great music, beautiful pictures and it only made me cry twice! https://www.facebook.com/?ref=logo#!/video/video.php?v=10150222455936140&comments

Another way you can make World Hemophilia Special is my clicking the donate button and helping someone in India who cannot afford treatment!

I pray all Hemophiliacs have a happy and healthy day and I pray that soon we will all have access to care.

World Hemophilia Day is getting close

2011-04-16T09:46:00.000-07:00

So, I found this awesome teaching lesson for those interested in learning about World Hemophilia Day! I think it's crucial that we raise awareness about Hemophilia and bleeding disorders in general. This lesson shows how to do so in an easy to understand manner!

Don't forget World Hemophilia Day is tomorrow Sunday April 17th! Wear red to show your support or feel free to click the donate button on my blog. All the money raised will go to helping Hemophiliacs in India who cannot afford treatment!

World Hemophilia Day (WHD) started in 1989 as a way to raise awareness of the disorder and to bring attention to the needs of those who suffer from it. The reason it’s on April 17 is because that’s the birthday of the World Foundation for Hemophilia (WFH) founder Frank Schnabel. On WHD, organizations around the world organise a wide range of activities, events, and campaigns to help hemophiliacs. There is a different theme every year. Previous campaigns have included “Get vaccinated! Prevent hepatitis A and B” and treating people with all bleeding disorders. The WHF says treatment includes areas such as physiotherapy, information, training, diagnosis, and research for a cure.

Hemophilia comes from the Greek haima "blood" and philia "to love". It is a group of genetic disorders that makes it difficult for the body to stop cuts bleeding. The cells that the body needs to clot blood are missing. Hemophilia is a hereditary disease and so it is passed down through generations. The gene that creates the disorder comes from the mother and is passed almost entirely to male babies. When hemophiliacs get a cut, the bleeding lasts much longer than in normal people. Even a small cut can bleed for weeks, and in some cases cuts may never heal. If cuts occur in the brain, they can be fatal. Hemophiliacs live a stressful life because they always have to be careful not to get even the smallest cut.

Read the entire lesson at http://www.eslholidaylessons.com/04/world_hemophilia_day.html

Hemophilia around the world

2011-04-15T13:35:00.000-07:00

For Many Hemophiliacs, Cost of Treatment Beyond Reach Nurfika Osman April 14, 2011

Article from the Jakarta Globe:

Three-quarters of Indonesian children who are known to suffer from hemophilia don’t receive the proper medication that allows them to lead normal lives, an activist says.

Moeslichan, chairman of the Indonesian Hemophilia Community Association (HMHI), said on Wednesday that the main obstacle was the prohibitively high cost of the deficient clotting factor, which sufferers must inject on a regular basis.

“The injections for hemophilia are very expensive: each unit of the [deficient clotting] factor costs 50 cents, and a person needs five hundred to a thousand units per shot,” he said, adding each shot could cost Rp 3 million ($350). “And a person with hemophilia may need three shots per week.”

Hemophilia is a genetic disorder that impairs the body’s ability to control blood clotting, thus rendering its sufferers prone to hemorrhaging from even minor wounds. The disorder is divided into two groups: hemophilia A sufferers have a deficiency in the clotting factor VIII, while those with hemophilia B have a deficiency in the clotting factor IX.

“If hemophilia isn’t managed properly, the patient will be unable to walk or move properly because of swelling in the legs and will die at a very young age,” Moeslichan said.

The disorder occurs in one in 10,000 people, meaning Indonesia could have up to 23,000 hemophiliacs. However, the HMHI says its data shows only around 1,200 patients in the country.

The group says there are five times as many Indonesians suffering from hemophilia A as there are those with hemophilia B. Hemophilia A is considered far more deadly than hemophilia B.

“Most of them aren’t screened, and this is very dangerous because they need a lifetime of medication,” Moeslichan said, adding that the disorder was rare in females.

Tunggul Situmorang, director of MRCCC Siloam Hospital in Semanggi, South Jakarta, said the challenge was to provide affordable treatment to patients without access to the much-needed medication.

“Affordable and good-quality medication is what they need,” he said. “If we can screen them, we can help hemophilia patients.”

To commemorate World Hemophilia Day, which falls on Sunday, MRCCC Siloam Hospital is planning a free seminar on Saturday for members of the public interested in learning more about the disorder. The hospital is also offering a 50 percent discount on blood screening tests for hemophilia starting on Saturday and running until the end of May. The tests usually cost Rp 310,000.

“Hemophilia isn’t just suffered by babies,” said Eka Tjokrosetio, coordinator of the hospital’s clinical pathology division. “Sometimes those in their 20s can also suffer the disorder, but with much less severe conditions.”

Eka added that MRCCC Siloam Hospital planned to set up a foundation for people who could not afford expensive medications.

Surfers pitch in for young hemophiliac

2011-04-12T17:58:00.000-07:00

So, a friend showed me this article and I think it is just awesome! I've attached a photo so you can see the ridiculous helmet I had to wear when I was a baby. But when it comes to safety your parents don't care what you look like. I guess I really did have a face only a mother could love. I hope you enjoy this article as much as I did.

Looking out over the water from the backyard of her Ketch Harbour home, Michelle Howell pointed across the bay to the tip of a headland while keeping an eye on Callum, her two-year-old son.

"Sometimes, we get surfers out past the point," she said Thursday. "It’s neat; they’ll walk all the way out along the shore to get out there."

A split second later, she darted off, chasing after Callum while her four-year-old daughter, Freya, played quietly nearby.

Callum has hemophilia A, a rare, genetic bleeding disorder that affects about one in 10,000 people in Canada.

Like other hemophiliacs, Callum’s blood doesn’t clot normally, meaning an innocuous tumble in the backyard could have very serious consequences. A fall on his knees or a tough spill onto the bum could cause lasting damage to his joints. A hard knock on the head could easily cause a life-threatening bleed.

It means Howell is constantly on her son’s trail, literally shadowing his every move and watching him like a hawk to make sure she’s there to catch him when he falls.

During the past nine months, Callum has been hospitalized eight times and Howell said they’ve visited the IWK Health Centre more than 100 times for blood infusions, a treatment that helps mitigate bleeds.

To help reduce their trips to the hospital, Howell tried to find something that would help cushion Callum when he fell.

"We tried a few things," Howell said. "We tried to cut up yoga mats. I even used lining for cupboards, but none of it held up really well."

Howell and her husband, Colin Guthrie, both avid sailors, then decided to cut up an old neoprene wetsuit to see if it would work.

The thick, rubber-like material turned out to be perfect for the job.

But the young boy quickly outgrew his first wardrobe, and his parents were out of wetsuits, which can cost upwards of $400 brand new.

With nothing suitable commercially available, a volunteer at the IWK suggested Howell contact the webmaster of ScotiaSurfer.com. They did and a short article was posted on the website outlining Callum’s condition and the family’s need for more wetsuits.

"The response from the surfing community has been great," Howell said.

In the month since the post went up, she has received eight wetsuits from surfers. Some of them told her they were more than happy to donate their wetsuits because it was a way to reuse a petroleum-based material that would otherwise be bound for a landfill.

Now she’s giving new life to old neoprene wetsuits used to protect surfers from the cold North Atlantic waves by transforming them into protective clothing for her son.

With the help of her mother-in-law, Vivian Hall, she’s sewn thick strips of neoprene on the elbows and knees of Callum’s shirts and pants to provide extra cushioning to the areas most susceptible to damaging internal bleeds. Anne Vaughan, a social worker at the IWK who works with Callum and other hemophiliacs, said it is the first time she’s heard of wetsuits being used as a cushion for hemophiliacs.

She said it seemed to be working and that was important because hemophiliac toddlers need to be able to roam and explore in order for proper and physical development to occur.

"It’s just in those early years where they need . . . a little bit of extra protection because they don’t know how to protect themselves," she said.

Vaughan said Callum is one of the country’s most challenging cases because "this little guy has an exceptional propensity for bleeding."

Howell hopes to convince local surf shops to accept donated wetsuits. Currently she’s meeting with people in random parking lots around Halifax.

And once her son’s situation stabilizes, Howell hopes to continue to create protective clothing, which she plans on donating to hemophilia treatment centres across the country.

"I feel like we’ve had really good support and I’d like to continue that, to reciprocate."

By GEOFF BIRD

Carter's Quest For A Cure A Success!

2011-04-11T14:51:00.000-07:00

So, this weekend was my Dad's 60th birthday celebrations. It was so nice to have my family around for the weekend. I wish they could be here all year round. I think my Dad had a really great birthday and I could tell my dad had a great time too.
This weekend was also, Mall at the Hall. We raised over 5,000$ for Hemophilia. It was amazing to see all the support and all the people that came out for this event. I spoke with Jenny, the organizer today and she said she is thinking of giving all the money to the Canadian Hemophilia Society's Million Dollar Club. http://www.hemophilia.ca/en/about-the-chs/to-support-us/hemophilia-research-million-dollar-club/.
This club is all about raising money for research for Hemophilia. I think this is a great idea and I am so proud of Jenny but it wasn't still she said, "We will donate the money to the Million Dollar Club so they can find a cure," that I realized I have never had any hope that they would find a cure for Hemophilia in my lifetime.
I consider myself a positive upbeat person but I have never dreamed of a cure this whole time I have been hoping and praying for a recombinant factor 5.
I also realized that my reasoning for joining the Hemophilia society was to raise awareness more so than to raise money for a cure.
Either way, we are all in it to improve the lives of lives for Hemophiliacs one way or another.
Another thought that occurred to me this weekend was that it would be so nice to have a family member with Hemophilia.
Of course, I would never wish this disease on anyone but it would be great to have a someone in my family who knew what I was going through.

Happy 60th Birthday Dad

2011-04-08T12:17:00.001-07:00

So, today is my Dad’s 60th birthday! My Dad and I have always had a close relationship even if we weren’t always close in proximity to each other.

We also look a lot a like! My mom always tells me the story about how she and I were in West Edmonton mall together when I was only a few years old and someone said to her, that must be Howie Radford’s daughter.

One of the best times dad and I had together was when I was about 12 years old. I was really sick and had to spend a year in the Janeway Children’s Hospital. My Dad flew down from Alberta and spent a few months with me in the hospital while I recovered. Even though I was in the hospital we had an awesome time together. We coloured and made arts and crafts watched tv and movies. We also spent many hours starting at Where’s Waldo books to see who could find him first. That visit really helped lift my spirits and my Dad really encouraged me to stay strong and get better. Eventually I was released from the hospital and my dad went back to Alberta. I was happy to get out of the hospital but I was also very heart broken to not have my Dad around anymore.

My Dad also makes me laugh more than any other person I have ever met in my life. Zane always says that he never hears me laugh as much as when I am around my Dad.

Since we now live in Calgary I get to see my Dad all the time. I call him every night and I get down for visits whenever I can. He is always there to support me when I am sick and helps me with life decisions. I can’t remember the last birthday I got to spend with my dad and I feel very blessed to be with him today!

Carter's Quest for a Cure

2011-04-06T18:53:00.000-07:00

So, as you know I am helping my friend, Jenny with her fundraiser called Carter's Quest for a Cure. It's been a lot of fun organizing it and it has been amazing to watch this grow from an idea in Jenny's head to a huge fundraiser that's taking place this saturday! It's amazing what can happen when people get together for a cause.
Calgary hemophilia group holds fundraiser

Carter’s Quest for a Cure takes place Saturday

By Lea Storry, Calgary Herald April 6, 2011 4:20 PM CALGARY -- A city mother just wants to take care of her son and is hoping others will help her in the fight against hemophilia.

World Hemophilia Day is coming up and Jennifer Ruklic and a small group are marking the occasion with Carter’s Quest for a Cure, a fundraiser on Saturday. Ruklic is Carter’s mom, and her two-year-old son suffers from severe type A hemophilia.

“Carter can’t clot his own blood,” Ruklic explained. “He needs a synthetic factor, and he gets IV infusions once a week. I do this at home, and from start to finish it takes about 20 minutes from getting his hands cleaned to the end of the treatment.”

Ruklic said she is amazed the youngest of her two kids can sit still for that long. He does wiggle a little bit, admitted the mom, but otherwise he’s a regular boy who loves to swim and play with his seven-year-old sister, Cassie.

Carter’s Quest for a Cure is taking place at the Glenbrook Community Hall at 3524-45th Street S.W. on Saturday from 10 a.m. to 4 p.m. There’ll be home-based businesses such as Epicure and Stella & Dot as well as a bake sale and raffle.

“It’s a worthwhile cause,” said Ruklic. “My son is only two years old and he can’t be his own advocate. He relies on the love and caring of the people around him.”

All proceeds will go to the Canadian Hemophilia Society, Southern Alberta Region. World Hemophilia Day is April 17.

lstorry@calgaryherald.com
© Copyright (c) The Calgary Herald

From a different point of view

2011-04-04T18:01:00.000-07:00

So, today I had an interview for a magazine in the states. They are writing an article about how social media is connecting people in the Hemophilia community and decided to write and article about me. I am really looking forward to reading it and I really enjoyed doing the interview today. I will post it as soon as it comes out. In other news I have been told that I use too many exclamation points so I am putting a stop to that!
This post is from a friend I work with on the National Youth Committee of the Canadian Hemophilia Society. His writing shows how Hemophilia affects not only the person living with Hemophilia, but also, the family. I hope you like his writing as much as I did! Also for the french translation visit http://generation-clot.blogspot.com/.

How Hemophilia has affected my life: from a different point of view.

I would like to start off by saying, unlike most writers on this blog. I do not have hemophilia, or von willebrand or any bleeding disorder of any sort; in fact you could say I am the exact opposite. My wounds heal extremely (and I do not use that term lightly) fast. Recently I have suffered a VERY bad wound while working which involved me slicing my arm open near my wrist and cutting some serious veins opened, so we rushed to emergency. When we arrived I took the towel off my arm, which was soaked in blood off to the surprise of my wound not bleeding what so ever. The doctor was astonished that it was not bleeding. He proceeded to tell me that it should have been a life threading injury and was puzzled how it healed so fast. Well that all about me, now for the good stuff

So you are probably now wondering how I am even connected to hemophilia after hearing that little blurb. Well ill start off at the beginning of this. My younger brother was born 3 years after me. About the time he was 1-2 years old he kept getting swollen arms and knees, we would keep taking him to the doctor he when through lots of x-rays and they could never figure anything was wrong, so he would end up getting casts because they thought he had broken something. Now for whatever reason when he was about 3 years old they decided to do some blood work on him, and they came back with some strange results, he was a severe hemophilia A. at first my parents had no idea what this was nor did any of my family. That is right none of my family back further then 120 years had and bleeding disorder that we knew of. My entire family and I (from my generation to my great grandparents) went through numerous blood tests (which I did not enjoy one bit being 6 years old) and came up with nothing after 3 tries for all of us! So they finally labeled it as a genetic mutation. We first went to a Nova Scotia hemophilia family weekend and meet a load of new people that had the same problems and they were all very nice and we had a great time. They had made it easier for my parents and my brother in many ways, including stress relief. My Father went on to become the president of the NS chapter for numerous years.

Now I am getting older and I would love to help give back to the Hemophilia society. I have been volunteering with our provincial summer camp for 4 years, which is a blast every year, for young and old! And now I am part of the national Youth committee. Everyone I have ever met from the effect of hemophilia is amazing, and I believe that hemophilia has changed my life for the better! I hope to someday be a “big wig” somewhere, anywhere! I could help out in this massive loving society. And to give back what was given to my family while struggling with my brother diagnosis of hemophilia. In this community you don’t have to have a bleeding disorder to fit in, you just need a passion. Anyone can help out here, bleeding disorder or not!

Six-Word Memoirs

2011-03-27T19:56:00.000-07:00

So, I found this awesome book, Not Quite What I Was Planning, Revised and Expanded Deluxe Edition: Six-Word Memoirs by Writers Famous and Obscure
It challenges you to write six words that describe your whole life!

Here's mine
Lived Laughed Bled Cried Almost Died.

What's yours?

Greetings from India!

2011-03-22T18:57:00.000-07:00

So, as I have mentioned before I have met lots of Hemophiliac friends from India! They are wonderful friends and we have been talking a lot about how we can improve the quality of life those living with Hemophilia. The following is from the Youth Group in India! If you would like to help out please let me know!

When you are young, you have lots of ideas and a free spirit and loads of enthusiasm to change the world. You not only understand the problems around you but you have innovative and new solutions for most of them. Someone just needs to guide you and nurture you to be the MAN/WOMAN you want to be.

National Hemophilia Youth Forum of India (NHYFI), a youth wing of Hemophilia Federation of India (HFI), was formed in 2004 as a platform for young haemophilic voices in India to be heard. HFI powered NHYFI with an organizational structure, manual, roadmap and a constitution to function. NHYFI now serves as a playground for the young budding leaders to get involved. Hundreds of youth across India today meet to help improve the quality of living for those living with Haemophilia.

NHYFI is built across a shared vision, value system and culture that bind the Haemophiliac youth with friendship and the feeling of belonging.

The broad goals of NHYFI are:

• Create Education and Employment opportunities for the youth across India.

• Create a self sustaining support chain for the youth.

• Build next generation leaders of the HFI.

The founding belief of NHYFI is that by empowering and guiding the Hemophilia youth today we are building a stronger and self sustainable Hemophilia community for tomorrow. HFI in sync with NHYFI arranges many activities to address youth issues such as education, marriage counselling and hemophilia care in general. In the last six years many young men and women of India have been benefited from these efforts. Many more shall be reached soon. We have a lot of obstacles in front of us but our spirit to win them over is greater.

Mall at the Hall

2011-03-21T18:55:00.000-07:00

So, I have been on a committee to plan an event called Mall at the Hall. The event is to raise money for Hemophilia! I am really looking forward to it and want to get as many people out as possible!
The following is an article all about Mall at the Hall!

When Jenny Rucklic’s little boy Carter started getting unexplained bruises she was shocked.

It wasn’t long until Carter was diagnosed with Severe Factor 8 Hemophilia, a genetic disorder that doesn’t allow his blood to clot properly. This diagnosis through the entire family for a loop.

“Hemophilia has turned our lives upside down,” said Rucklic.

But Jenny isn’t the type of mom who takes things lying down. She immediately jumped into action and has been doing everything in her power to help improve the quality of life for her little boy.

“I want to raise awareness and helps others living with Hemophilia as much as I can,” she said.

Hemophilia causes Carter to bleed into his joints and muscles. These bleeds are very painful and are treated with replacement factor. The factor is administered with a needle and takes about one hour to infuse.

There is no cure for Hemophilia. It is estimated that 1 in 5,000 people has a bleeding disorder.

Jenny is currently the secretary of the Calgary Chapter of the Canadian Hemophilia Society and has recently started her own charity, Carter’s Quest for a Cure.

Her first event is Mall in the Hall. A neighbourhood hall filled with vendors such as Stella and Dot, Arbonne, Discovery toys, Scentsy and many more. There will also be a bake sale and raffle prizes. The raffle prizes include meals, movie tickets, spa gift certificates, Calaway park tickets, tickets to the Calgary Zoo and sports tickets. All the proceeds will go to helping people living with Hemophilia.

There will also be a kids section so parents can shop. Coffee, tea and soft drinks will be available.

Mall at the Hall takes place on April 9th, Saturday 2011 at Glenbrook Community Hall 3524 - 45 Street SW from 10 a.m. to 3 p.m.

For more information, contact Jenny Rucklic at

-30-

Chicken Soup for the Hemophiliac Soul!

2011-03-20T20:00:00.000-07:00

So, today I was getting a little stir crazy sitting around the house and I think I started to feel a little bit sorry for myself because the house is messy and I've been eating toast for every meal since Friday! Anyways, I was feeling a bit sad but I was so blessed to have two little visitors today! My friend Ange came and cleaned up my kitchen for me! she is so sweet! And my friend Dan dropped of a delicious pot of chicken noodle soup for me! I know to them these things were not that significant but it was so wonderful for me I must say. There's only so many movies you can watch Life as We Know It and booksLittle Bee: A Novel you can read.
I'm actually so excited to get back to work. I'm aiming to head back on Tuesday so I am praying my ankle doesn't cause me anymore pain.
I remember when I was a little girl and I would have terrible pain in my ankles from bleeds I would get my sister to sit on my feet! I don't know why but the pressure would make it feel better.
Ankle bleeds were always my target joints for years and years. I remember when I would sleep over to my grandmothers house I would be up in the night crying and crying in pain and she would get a hot water bottle for me and put it on my ankles. When I look back on it I hate that I had to suffer so much and it must of been so hard for my family to watch me in such pain but I wasn't followed by a proper Hemophilia clinic and we just did the best we could! Home remedies got me this far in life so I guess there is something to being around friends and a good cup of chicken noodle soup!

Crutching along!

2011-03-19T21:02:00.000-07:00

So, I was doing my good deed for the day by letting my friends dog out for her while she was at an appointment. On my way to her house I slipped ion her yard, I caught myself but I guess I must of hyper extended my foot because by Friday I was almost in tears because of the pain. I was really upset because I had to call in sick today for work and it's only my first week! But I was just in too much pain to go through a full day of work!
I met one of my favourite Hematologist at the Peter Lougheed Centre and she examined me for signs of a bleed. I also got an X ray to ensure it was not a bleed. The test revealed that a pulled a muscle in my ankle and am now on crutches!
And if you have been reading my blog you'll remember that Zane is also on crutches so we've been crutching along around the house.
We've been eating only take out and the house is a bit of a mess but in a few days this will just be a memory!
In the meantime we are watching movies and listening to music! Like Adele which I love! 21.
If you are in the mood you are more than welcome to come and clean our house our cook for us!!

New Job!

2011-03-08T19:35:00.000-08:00

So, I had an interview today! I thought it went really well I must say and my suspicions were confirmed when I got a call today around 6 p.m. saying I got the job! I was so excited when he called. I accepted of course and I start tomorrow morning at 9 a.m.
The job is a marketing assistant of a jewellery company. The office is absolutely beautiful and there is something so exciting about walking into a room filled with beautiful diamonds and jewels.
The other people who work there seem really nice and it is only a 15 minute drive from my house which in Calgary is a huge benefit.
Zane is still laid up but he is getting better day by day, bit by bit.
I am also gearing up for our Chapters Volunteer Appreciation night which is this Friday! I'm really looking forward to it as we have great food, great wine and great people! I must say it's a good day for me thank god!
Right now I am off to bed as I have an early morning. I am really looking forward to this job and I am praying I have a happy and healthy new career ahead!

When the shoes on the other foot...

2011-03-06T22:37:00.000-08:00

So, last week Zane tore a muscle in his calf! He has been in so much pain and has to use crutches to get around.
I must say if I had the choice I would much rather be sick than him! It seems like when I am the sick one things run much more smoothly. For example, I've been driving around with the hood up for the last few days with the block heater cord hanging out, also I went to take the garbage out (which Zane normally does) and ended up locking myself out for like ten minutes!
Also, it's hard to watch someone you love in pain.

With that being said I did have a great birthday! I had a few friends over and celebrated with some food and wine. Zane celebrated with us and you would never know there was anything wrong with him. I am always amazed at how people can still have a smile on their face despite huge obstacles. I've noticed this especially in the friends I have met from India. They do not have free medical care and sometimes have major complications because of their lack of access treatment. Yet, every time I talk to them they are always kind and pleasant no matter what, even when they are having a bleed. It is very inspiring and encouraging!

Poppy!

2011-03-03T21:50:00.000-08:00

So, today is my Poppy's Birthday! He is 88 today! We are 60 years and one day a part! I absolutely adore my poppy. I think all of us grand children do. He is everything a grandfather should be, kind, sweet, caring and funny. My poppy worked as a cook so he always had to most delicious cakes and cookies around and make the best Sunday dinners ever.
When I think of my poppy I think of the time I was in the hospital in Stephenville as a child. I can't even remember what I was in for, a bleed somewhere. I was in for about a week or so and I really missed seeing their dog Puppy! (yes the dog was named puppy.)
So my grandfather went home, got the dog, drove up to my hospital window and held the dog up so I could reach out and pet him.
My grandfather is also a beautiful artist. He is a self taught artist. He uses oil paints. When I was a kid and I was home sick from school with a bleed he would let me use his paints and teach me how to paint flowers. I currently have a painting that we did together hanging in my house and to this day it is one of my most prized possessions!

Rahul

2011-03-01T19:10:00.000-08:00

So, lately I have been talking to a lot of new friends I have made on Facebook! One such friend includes Rahul. He is a kind and thoughtful person and has been struggling with Hemophilia all of his life. Please read his story. I am hoping that it will inspire you donate to his cause by clicking the donate button!

Hello my name is Rahul I am a severe factor 8 from India. I have a family history of Hemophilia and throughout my life it has caused me many problems.
The medicine used to treat a bleeding episode is very expensive and hard to get. The Hemophilia Treatment Centre is far away and is hard for me to get to.
I would love to improve my quality of life and would like to do so by opening my own business. The idea is to open a gift shop that sells fancy stationary and specialty items. Once I open my store I plan on employing other Hemophiliacs as well. Opening my own business would give me my independence and help me and my family with our medical expenses. Please donate to my cause and help us start a new life!

Thank you to Rahul for sharing your story and I am hoping that will encourage us to get involved and help out where we can!

News

2011-02-28T21:31:00.000-08:00

So, this post is to let you know about the new and exciting things that are coming up for the Canadian Hemophilia Society.
The new strategic plan that the organization has adopted for 2011 will focus more on international relations which means helping those around the world who can not afford medicine and factor.
I am so excited about this as this is an issue that has been bothering me for quite some time!
I would also like to bring attention to the article I wrote in the latest newsletter http://www.hemophilia.ca/files/HT%20MAR%202011%20FINAL%20(for%20web).pdf
In this publication you will also find TWO pictures of me and and article where I am called "young" and "ebullient".
All in all a great issue of the newsletter if I do say so myself!
Please take a few minutes and read! Let me know what you think!

Resources

2011-02-27T21:59:00.000-08:00

So, lately I have been getting a lot of questions about what to do when you can not afford product. It shames me to admit it, but I did not realize that this was such a problem but I have to say that it breaks my heart to think about someone having a bleed and not being able to afford product.
Currently, I am trying to figure out a way I can help whether it be raising more or setting up a product share program in Canada.
In the meantime the following links are places you can go for help and information when it comes to dealing with Hemophilia.
http://www.hemophilia.ca/
http://www.saveonelife.net/
http://www.kelleycom.com/
http://www.wfh.org/index.asp?lang=EN

I hope you find this information helpful! If you have any questions please leave me a message and I will do my best to answer! If you would like to make a donation to this blog, the money will go to helping people in developing countries with Hemophilia, please click the Donate button and following the instructions.

Drugs, Drugs, Drugs

2011-02-23T20:00:00.000-08:00

So, as I have been writing about before, I spent the weekend in the hospital with a leg bleed. It's feeling a lot better now thank god and I am not taking any pain meds. However, before I went into the hospital I was in a lot of pain and when you are in pain you don't sleep and when you don't sleep you don't think logically and when thus I took way too much pain medication. When my Hemophilia nurse read my chart and found out what I had been taking she was very alarmed. She told me about a Hemophiliac who was having a bleed and happened to have some left over pain medication from a previous bleed so he decided to take some. When you take pain medication it can cause breathing problems so this Hemophiliac stop breathing and died. All because he took too much pain medication. I couldn't believe it when she told me. I thought you could only overdose from taking tons and tons of pills and illegal drugs and alcohol. I didn't think you could die from take one or two pain pills.
So from now on instead of taking pain medication I am going to wait until I am in a hospital under proper supervision!

It's my blog and I can complain if I want to

2011-02-21T21:38:00.000-08:00

So, I spent the weekend in the hospital. I got out yesterday and today I still feel agitated and irritated by the whole situation.
First of all when we got to emergency we waited in not one, not two, but THREE separate waiting rooms! Then every time they called Ryanne Radford I would go up to them and say yes, and they would keep calling Ryanne Radford! whats up with that? I mean I know Ryanne isn't a traditional name but Calgary is a city of one million people they must of come across some crazier names then that!
Anyways after a two hour wait and getting moved around my doctor says we are going to give you apheresis plasma because its safer. So right away I get my back up because I have never heard of this type of plasma and when it comes to blood I don't want to take any chances. Anyways after that was all strengthened out I was given so much drugs and plasma that all I wanted to do was sleep, but sleep at the hospital was nearly impossible. First of all my room was right across from the cleaning ladies room or something and all they did was chat super loud the whole night until I had to get up out of bed unhook my IV and ask them to be quiet.
Once I finaly fell asleep various nurses came in to check my vitals and the lab came in at 4 a.m. to check my blood.
So needless to say I got to sleep. By the time the Hemotologist came in to see my I was so wound up I told her I refuse to stay any longer in the hospital longer and almost refused further treatment until she calmed me down with some ativan.
The only things that helped my experience was a visit from Zane and my Dad and Extreme Will Power & Total Motivation Self Hypnosis.
Othen than that the whole thing was a complete nightmare and it's still taking me sometime to unwind from it.
I feel like our health care is not good enough. I know it could be worse and all that but our health care system is not great and I don't understand why? What could be more important than our health care? I think everyone should have to get a blood transfusion and stay over night in the hospital just to see what it's like! I have a theory that if that happened we would have a much different health care system!

Weekend away

2011-02-19T19:27:00.000-08:00

So, I am writing my first blog post from the hospital. I came into the hospital today with severe pain in my left calf muscle. So far I have had hydromorphine, percocet benadryl and 4 units of plasma! I have no idea how I am still awake! I am relieved to be in the hospital and on my way to getting better but I must say I am depressed to have to be spending my long weekend in the hospital. All of my friends are out tonight and I was suppose to be there and Zane and I were going to go out to celebrate out 5 year anniversary. I guess I shouldn't be that upset, this is by no means the first time I have sat out on fun events but I guess no matter how many times it happens it still hurts. I also don't have as much family and friend support here in Calgary. And the fact that I still do not have a job doesn't help anything either. I guess I will go and have a Dixie cup and hope that things look better in the morning!

Carter's Quest for a Cure!

2011-02-16T20:51:00.000-08:00

Happy Saint Valentine's Day

2011-02-14T20:58:00.000-08:00

So, today is Valentine's Day! I love valentine's day! I know a lot of people hate Valentine's day because they are single or whatever but I think that is foolish. I think society makes people feel like they have to have a boyfriend to feel special and it's all about how many roses or chocolates you get but I always thought of Valentine's day as a day to tell people you love them, whether it be your friend, boyfriend or parent. I have been very blessed over the past six years to be with Zane because he always gets me a beautiful card, chocolates, flowers and a gift! This year he got me Tuneband for iPhone 4, Grantwood Technology's Armband, Silicone Skin, and Front and Back Screen Protector, Black and chocolates and lilies and a delicious supper! I am very spoiled I must admit but it wasn't always like that for me. I spent one Valentine's Day in the Health Science centre in St. John's where I spent two months for a major hip bleed. I've also spent Valentine's day in the hospital in Stephenville, so it hasn't always been a bed of roses.
Anyways, I think on Valentine's Day you have a choice, you can see it as a day to tell people you love them or you can see it as a sad pitiful day.
I love it and not matter how bad it has been at times I love little cinnamon hearts and writing out Valentine's cards!

Happy Blog Anniversary to me!!

2011-02-13T21:03:00.000-08:00

So, one year ago this month I started my famous blog, Hemophilia is for Girls! I love having a blog, it is a lot of fun and therapeutic for me and hopefully it will continue to raise awareness about Women and Bleeding Disorders.
To date Hemophilia is for Girls has 71 Followers and 75 posts.
The top 5 countries that read Hemophilia is for Girls are Canada, USA, India, Ukraine and the United Kingdom.
Also, I have helped start Generation Clot http://generation-clot.blogspot.com/.
My blog is also on Twitter at Ryannesiobhain, you can find it on My Girls Blood http://mygirlsblood.org/ and on the Canadian Hemophilia Website http://www.hemophilia.ca/.
My blog also won a contest through My Girls Blood for $50 and Google has sent me a coupon for $100 to use towards advertising for my blog!
All very exciting stuff for me considering I had no idea how to create a blog a year ago but Blogger has been very easy to use!
Thank you to everyone for reading! I really appreciate it! Here`s to another year of blogging!

Responsibility!

2011-02-12T22:47:00.000-08:00

So, the other day I called my pharmacy and asked them to fill two prescriptions for me. I take medication on a regular basis so I depend on my pharmacist to have my medication and to tell of possible side effects. So when I showed up today to pick up my prescriptions I assumed they would be in the bag that they passed me. I arrived home only to find one of my two needed prescriptions. I decided to phone them and see what happened. He told me that they didn't have my medication in stock. Information that would of be great to know on Thursday when I first called. If they would of told me up front I would at least had a chance to get my prescription filled elsewhere. I called the pharmacy guy who didn't really seems to care. So I called the manager who also didn't really seems to care. I plan on calling their corporate office on Monday and I will also be changing pharmacies. But a big company like that doesn't really care. If they loose one customer it makes no difference to them. I guess at the end of the day it's my responsibility to ensure I have lots of medication on hand even though most health care plans will only let you have prescriptions once per month. I guess I will have to start keeping a little stash of pills for when the pharmacy screws up!

Bleedy Swan

2011-02-04T20:40:00.000-08:00

So, I am watching Black Swan and it reminds me of my dancing days! When I was a little girl my grandmother signed me up for dancing lessons, I took one class, got a bleed and was never allowed to go back!
I was very disappointed at the time but dancing was probably not the best activity for me.
This pattern has happened over and over throughout my life. I try something, I get a bleed, I quit.
I keep getting back up and trying again but lately I have been wondering how many times and I get back up smile and try again?
The only thing I can be sure of is that I will get sick again to some capacity and I must admit it is discouraging.
Never the less, I am currently job searching for something in my field. I would love to work in something to do with Hemophilia, sadly, there aren't a lot of jobs in this field. For now, I will keep volunteering and try to keep a smile on my face!

En Francais Sil Vous Plait!

2011-02-03T18:31:00.000-08:00

My blog! Now in French!
Yes I have completed years and years of french immersion but I don't use it a lot so don't expect a lot of french posts!

Nous sommes fiancés depuis cinq ans et il est maintenant temps de commencer à planifier le mariage!

Je planifie mon mariage depuis que j'ai 12 ans. Je sais exactement ce que je veux : un gros mariage à Stephenville, Terre-Neuve, avec un repas gargantuesque, beaucoup de vin, des fleurs, et tous mes amis. Le seul problème, c'est que l'organisation d'un mariage est très stressante et que Zane et moi sommes préoccupés par mon état de santé. Un voyage à Terre-Neuve serait une épreuve difficile pour ma santé et avec le stress d'un mariage en plus, nous craignons tous les deux que je puisse être malade. L'autre problème, c'est le budget. Les mariages coûtent tellement cher que j'ai dû diminuer mes attentes face à mon mariage. Je pourrais raccourcir la liste des invités, commander moins de fleurs, mais j'ignore complètement ce que je devrais faire pour préserver ma santé! Je mange sainement et je prends beaucoup de vitamines, mais rien ne garantit que je serai en forme le jour de mon mariage. Zane a proposé de faire le mariage Calgary. Ainsi, si j'ai des problèmes de santé, toute mon équipe médicale est ici. Par contre, mon cœur est à Terre-Neuve! J'y suis née et j'y ai été élevée, et je crois qu'il est tout à fait approprié que je me marie à Terre-Neuve. Comme de nombreux hémophiles, j'ai appris à la dure qu'on ne fait pas toujours ce que l'on veut. Pour ce qui est du plus beau jour de ma vie, je crois que je devrai m'assurer que mes amis les plus proches et ma famille sont présents et que je profite au maximum de la journée, peu importe l'endroit ou le moment!

Generation Clot!

2011-02-02T21:59:00.000-08:00

So, as you may know I am the co-president of the National Youth Committee. Our goal is to raise awareness about bleeding disorders. Recently, we have decided to start our very own blog aimed at youth and youth issues! Please take a minute and check it out at http://generation-clot.blogspot.com/
I hope you enjoy it and look forward to hearing your feed back!

Save One Life

2011-02-01T19:28:00.000-08:00

So, I was talking to one of my wonderful Hemophilia friends in India. He said he was having a bleed in his knee, so I said well you better infuse right away.
He told me that product in India is very expensive and he is only able to use product when it is an emergency. In the case of the knee bleed he uses, rest, ice, elevation, compression which is great, but should not be used in place of product.
Our conversation really bothered me. I hate the fact that all Hemophiliacs do not receive the same level of care just because of money.
The next day I found that I was still upset over this and felt almost depressed about it but I felt there wasn't anything I can do about it.
I was very wrong.
Save One Life is a program set up to help Hemophiliacs of all ages who do not have access to adequate health care.
The cost is only $20 a month and can make a huge difference in the life of a Hemophiliac!
You can read more about it at http://www.saveonelife.net/.
Please think about it!

New and Improved?

2011-01-30T20:14:00.000-08:00

So, one of the things that have been on my mind since the report on Canada's blood system.
First of all, I think the report should show A+ in every category. This is our blood system we are talking about. There is absolutely no room for error. I think for the most part, people don't think about the importance of blood safety. But just because you aren't a Hemophiliac doesn't mean you won't need blood at some point in your life. Blood transfusions are used for patients who suffer from cancer, injury, major surgery, child birth or a car accident. So you see it's something that concerns everyone.
I was happy with most of the report except for the part about Plasma. The following is a section fo the press release from the Canadian Hemophilia Society.
"The provinces and territories continue to fund the suppliers of blood, blood products and their alternatives in such a way that they can provide life-saving products to Canadians in sufficient supply… with one exception. Solvent detergent treated plasma (SD-plasma) is still unavailable, despite licensure by Health Canada in 2006, a lower risk of blood-borne pathogens and adverse reactions compared to fresh frozen plasma, and the fact that SD-plasma is the standard of care in many European countries."
I have been using Fresh Frozen Plasma for about 27 years. Luckily I have had no problems with plasma in terms of blood born pathogens but I have had many allergic reactions to the plasma including, hives, difficulty breathing and seizures.
So if this SD plasma is better then of course I would like take it but it's a hard decision to make, it's not like trying out a new lipstick. This decision will have a huge impact on my life.
At the moment, I feel as though I do not have enough information to make a decision.
I've been reading a lot of articles and it seems like they are not 100% which one is better either. For example, in the case of the SD plasma so of it its powers (for lack of a better word) are lost.
The FDA has approved SD plasma, and some studies how that it is better, but as Hemophiliacs we have learned the hard way that you can't always believe what you read and what you are told is safe.

Report Card on Canada's Blood System

2011-01-27T09:53:00.000-08:00

So, Today the report on Canada's blood system was released. Some parts are quite concerning to me since I used Fresh Frozen Plasma all the time.
There are some points I will be discussing with my doctor but for now I would like to share the report with you and see what you think. For the full report visit http://www.hemophilia.ca/.

FOR IMMEDIATE RELEASE

CANADIAN BLOOD SYSTEM VERY SAFE BUT

ACCOUNTABILITY TAKES GIANT STEP BACKWARDS

Montreal – January 27, 2011 – The 2008-2010 report on Canada’s blood

system, prepared by the Canadian Hemophilia Society (CHS), has found that

blood, blood products and their alternatives are very safe and in sufficient

supply; however, the system’s accountability to recipients has taken a giant

step backwards.

According to Canadian Blood Services (CBS) by-laws, and following

recommendations of the 1997 Krever Report on Canada’s Blood System, two of

the 12 CBS Board positions are reserved for persons with “relevant knowledge

or experience with organizations representing persons consuming blood and

blood products.” Over the last decade, almost all of these positions have been

held by individuals with very close links to recipient organizations and

extensive knowledge of safety and supply issues. However, during the 2009

and 2010 Board renewal process, the Members of CBS, the provincial/territorial

Ministers of Health (except Quebec), named both “public directors” with no

apparent links to recipient organizations and little knowledge of key issues from

a recipient perspective. A number of recipient organizations have denounced

the selection process as lacking transparency and resulting in the exclusion of

an effective recipient voice at the top level of decision-making at CBS… to no

avail. David Page, CHS national executive director, said, “Members of recipient

organizations see their exclusion as a clear contravention of CBS’ own by-laws,

and a giant step backwards in accountability.

Meanwhile, Héma-Québec has maintained Board positions for individuals with a

recipient organization perspective.

On a more positive note, the report finds that CBS, Héma-Québec and Health

Canada (the regulator of the blood system) have maintained a clear focus on

safety. Blood and blood products are safer today than at any time in the past.

The provinces and territories continue to fund the suppliers of blood, blood

products and their alternatives in such a way that they can provide life-saving

products to Canadians in sufficient supply… with one exception. Solventdetergent

treated plasma (SD-plasma) is still unavailable, despite licensure by

Health Canada in 2006, a lower risk of blood-borne pathogens and adverse

reactions compared to fresh frozen plasma, and the fact that SD-plasma is the

standard of care in many European countries.

The September 2010 decision by Justice Aitken of the Ontario Superior Court in

the case of CBS vs. Freeman was welcomed by recipient organizations. The

judgment found that current donor deferral criteria for men who have had sex

with men are not discriminatory. As a result, decisions on screening procedures

will continue to be made on the basis of the latest science and epidemiology.

The period covered by this report also saw the adoption of legislation in

Quebec to provide no-fault compensation in the event that persons are injured

by blood or blood products. Such a measure was the first recommendation of

the Krever Commission. The other provinces and territories are relying on CBS’

self-insurance scheme to provide compensation in the event of another tainted

blood tragedy.

Unfortunately, the last three years have seen little progress in the development

of a national Orphan Drug Policy that would facilitate the licensure and

availability of therapies for rare diseases. Canada is the only highly developed

nation without such a policy.

In addition, the Public Health Agency of Canada has, without notice or

explanation, stopped funding the Blood-Borne Pathogen Surveillance Project at

the University of Alberta. This bank of blood samples from frequently transfused

individuals is critical to effective monitoring of emerging pathogens in the blood

supply.

The 2008-2010 Report on Canada’s Blood System is the fifth to be released

since the reform of the blood system in 1998 following the Krever Commission.

In its preparation, the Canadian Hemophilia Society sought input from recipient

organizations, Health Canada, manufacturers of fresh blood components,

Canadian Blood Services and Héma-Québec. The 2008-2010 report card and

the four previous report cards can be found on the CHS Web site at

www.hemophilia.ca/en in the Safe, Secure Blood Supply section.

ABOUT THE CANADIAN HEMOPHILIA SOCIETY (CHS)

Founded in 1953, the Canadian Hemophilia Society (CHS) is a national

voluntary health charity. Its mission is to improve the health and quality of life

of all people with inherited bleeding disorders and ultimately to find a cure. Its

vision is a world free from the pain and suffering of inherited bleeding

disorders.

- 30 -

Do you invite Hemophilia to your wedding?

2011-01-16T19:36:00.000-08:00

So, we have been engaged for about 5 years now and it's finally time to start planning the wedding!
I have been planning my wedding since I was about 12 years old. I know exactly what I want. A big wedding in Stephenville, Newfoundland with tons of food, wine, flowers and friends. The only problem with that is weddings are very stressful to plan and Zane and I are concerned with my health. Travelling to Newfoundland is hard on my body and with the stress of a wedding we are afraid I may get sick. The other problem is the budget. Weddings are so expensive so for the past few months I've been trying to down size my dreams for my wedding. I can cut down on some of the people and I can cut down on the flowers but I have no idea as to how I can keep myself healthy! I've been eating well and taking lots of vitamins but I can't guarantee that I will be healthy on my wedding day. Zane suggested we change to wedding to Calgary that way if I run into any health problems I have my whole medical team here. However, my heart is in Newfoundland! I was born and raised there and think it is fitting to be married there. But as I have learned the hard way as many Hemophiliacs have, you can't always get what you want. So when it comes to my big day I think I will have to ensure my close friends and family are there and enjoy the day no matter where or when it is!

I love you Stephenville!

2011-01-08T18:56:00.000-08:00

So, I am home safe and sound at our place in Calgary! It's good to back in our own home and to be reunited with our dog Lily. However, it broke my heart to leave my Stephenville. I absolutely love it there! It's so nice to go down town and see people you know and have people smile at you even if they don't know and hold open doors for you. It's also wonderful to be around my family. Even if it's just getting together it's so comforting to be around family. Zane and I have decided to settle in Calgary simple because he has great work here and because of the Hemophilia clinic. The people in the hospital in Stephenville are great, but they don't have the services that are available for me here in Calgary. I guess I have to be content on spending lots of money on flights and phone calls!
In other news, I got a Apple iPhone 4 Black Smartphone 16GB for Christmas! It is one of the best gifts I have ever received! The other awesome gift I got for Christmas was a baking pan from Charlie. He bought it for me before he died and I was so happy to get it.
Now that Christmas is over, reality has set in and I am working on loosing weight and finding a full time job! Wish me luck!

Happy New Year

2011-01-03T13:02:00.000-08:00

So, it is officially 2011 and I am happy to say that I am healthy (for the moment).
I pray that this year is a happy and healthy year for me and my family as 2010 was a complete nightmare.
I have a lot of things to look forward to this year, my mom is coming up to visit me in Alberta, I am planning my 10 year high school reunion in August and Calgary is hosting a very large hemophilia conference in May which I am really looking forward to. I am also hoping to find a new job when I get back to Calgary so hopefully this year will be a good one.
My resolution this year is to lose weight, I feel like I say that every year but this year I am going to try and focus on my over all health which means exercising more and eating healthier.
It will certainly be a challenge but I feel like I am finally up to it!
What are your New Years Resolutions?

Christmas Blood Transfusion

2010-12-18T17:49:00.000-08:00

So, I made it home to Newfoundland safe and sound. I was delayed all the way down and my luggage didn't show up until two days later but I made it! However, I guess all the travelling and stress did get to me because today I was in so much pain I had to go in to the hospital for a blood transfusion. I've been having pain in my hip for the past few days now so I decided to go in and get it checked out. They are use to seeing me at the Stephenville hospital so it was only about 4 hours and I had my 4 units of fresh frozen plasma and some pain medication. I am home resting now and praying that I will only need those four units and not have to go in for more. I kept my IV in just in case but I hope I will not have to use it.
I feel much more comfortable with my doctors and nurses in Calgary but I have to say the nurses here in Stephenville are the nicest people in the world. Hopefully I can spend the rest of my trip eating chocolate and opening gifts! We'll see how it goes in the morning!

Christmas Countdown

2010-12-09T20:34:00.000-08:00

So, yesterday I went to the dentist to get a crown put it, it seemed to go off without a hitch so I am happy about that! I also got to spend the night at my dads house, we decorated the tree had a delicious supper and Dad gave me a GPS system for my car which I am so excited about because I am the worst at finding my way around the city!
There are only four days left until I go to Newfoundland for Christmas. I am absolutely positively so excited but at the same time I am very nervous, I really don't want to end up in the hospital especially in Stephenville because I don't have my Hematology team there.

I am eating healthy, taking lots of vitamins and getting lots of rest in an effort to keep myself healthy! In the meantime I am running around trying to get all of my shopping done. No matter how much I buy I still feel like I need to do more shopping! I don't care what I get for Christmas as long as I stay healthy until at least January 7th!

World AIDS Day

2010-12-01T21:20:00.000-08:00

So, today is world AIDS day! I think for most people it might not mean anything. For those in the Hemophilia Community world AIDS day brings up horrible memories. For me, I remember a family I met when I was living in Halifax, NS. The family that I had the pleasure of meeting had two sons that had severe factor 8 hemophilia. Both sons contracted the HIV virus through the tainted blood in the 1980's. The family was so devastated that they told everyone the boys died from severe bleeds when in fact it was AIDS. They didn't want people to know the truth. Sadly, for a lot of Hemophiliac families this story is very similar to their own. You see in the 1980's almost an entire generation of Hemophiliacs were injected with tainted products containing the HIV and Hepatitis C virus. World AIDS day makes me think of all the people we've lost to this horrible disease and it reminds me that the Hemophilia community is still at risk. Until all Hemophiliacs have a recombinant factor that contains no human blood product what so ever we are still at risk.

Hemophilia Christmas Party!

2010-11-28T18:53:00.000-08:00

So, last night was the Southern Alberta Region of the Canadian Hemophilia Society Christmas party! It went really well! We had one of the best turn outs yet! The food was delicious and there was face painting and a visit from Santa! The highlight for me was being elected to my new position on the board. I am now the President! I am very excited and I will be sharing the role with another volunteer as well as three other awesome members of the executive. I have a few ideas for this upcoming year but my main goal is to ensure that things continue to run as smoothly as they have been and try to do as much programming as we can. We also do not have a lottery license so one of my goals is to get our lottery license so we can fundraise. So I am thinking with my new role I need to be more accessible so I must get a Apple iPod touch 8 GB (4th Generation) NEWEST MODEL. But since my position is a volunteer position I might just have to stick with the old cell phone I already have!

All I want for Christmas is my two front teeth!

2010-11-22T19:33:00.000-08:00

So, I went to the dentist today, I had to get fitted for a crown. A crown is a little tooth piece they put over the damaged tooth. I must say it wasn't too bad at all! It only took about an hour and a half and there was no bleeding at all so I was very happy about that.

The bad part was having to brave the bad weather to go to the appointment. Luckily my Dad picked me up and we ended up having a nice day together! Speaking of the weather historically, I tend to have more health problems in the winter months. Almost all of my big bleeding episodes have occurred in the winter. I don't know exactly why but I think it is because the winter is harder on your body. Either way, the winter is my most hated time of the year. I love the way the snow looks and I love Christmas but it's definitely not a good time of year for me. I am hoping however that this year will be a good Christmas! I am planning on getting my momma a Karaoke Machine Singing Machine ISM1010 Home Karaoke System. She loves singing and so do I, so I think it will be fun for everyone well maybe not our family and friends because they will have to listen to us but at least it will be fun for Mom and I!

Sissies!

2010-11-18T21:38:00.000-08:00

So, Zane and I are getting into the Christmas spirit by putting up our tree this weekend! I always love putting up the tree while listening to cheesy Christmas music is it bad that I really want to buy O Holy Night (CD/DVD)this year?
Anyways, I've been thinking a lot about the conference I just went to in Vancouver and I thought about how almost all of the participants were paired up for example, sisters, brothers, mothers and daughters. But my whole life I have never had that! Everyone in my whole entire family is pretty much healthy so I've never had someone in my family with Hemophilia. Until I met Tammy. When I was about 12 years old my mom came home and told me that we had another sister who turned out to be a carrier of Factor 5 deficiency. I was blessed to have one older sister, Kelli but when I found out we had another sister I was ecstatic! The more I get to know Tammy to more I find out how she is so much like us! The last time she was in Stephenville was for Charlie's funeral it was an awful experience but having Tammy there felt right. It felt like it should have always been that way, the three of us putting on our make up and getting ready in the bathroom, all of us having meals together and laughing and joking.
Sometimes I get sad to think about all the years I didn't get to spend with her but in the end I feel like I am so glad to have her in my life now!

Christmas Past

2010-11-17T15:23:00.000-08:00

So, with Christmas coming up I've been counting down the days until I leave for Newfoundland! Only 26 days! I've got all of my Christmas cards filled out and I've decided to get Zane a Kindle Wireless Reading Device, Wi-Fi, 6" Display, Graphite - Latest Generation. This will be our first trip to Newfoundland at Christmas time in four years. The last Christmas we went home we got as far as the Edmonton airport and I felt like I was getting a urinary tract infection. I remember calling home and Charlie answered. I cried and cried and he said it's ok darling, it will be ok. The pain was excruciating and by the time I got to Deer Lake, NL I was besides myself in pain. Mom took me to the hospital and after taking a few antibiotics I started to feel better. A few days later an cyst on my ovary ruptured and began to bleed into my abdomen. Again I was in so much pain and the doctors would not give me any blood or pain medication. I was taken by ambulance to Corner Brook where they talked about doing surgery and all sorts of foolishness. Anyways to make a long story short, I was released from the hospital on Christmas eve and was told to take it easy. I remember Christmas morning sitting in a pile of wrapping paper and gifts thinking, this is the worst Christmas ever, I was exhausted, dehydrated and on top of it I had the worst flu I ever had in my life. But, at least we all together, our family dog Jessie was sniffing around all the gifts and Charlie was sitting in his big arm chair smiling. I never thought I would say this but I would give anything to have that Christmas back again. This year I am hoping to be healthy but I will never have Jessie and Charlie back again. I love Christmas and I am really looking forward to it but I know it's going to be a tough one!

False Alarm

2010-11-15T00:36:00.000-08:00

So, after spending Friday night and Saturday day in bed my leg started to feel a lot better. I don't think anyone should ever do what I did, but I decided to suck it up and I went to the Christmas party with my friends. It was a beautiful party, they had an acapella group singing when we walked in, a DJ a live band and an acrobatic show. The food was absolutely delicious and Zane and I ended up having a really nice night! Had a woken up this morning in even worse pain I would not be singing the same tune but I woke up today feeling fine so I am really glad I went. Zane and I don't get a chance to get dressed up and go out very often so I am glad we went out. With that being said, I think that if you ever suspect you are having a bleed you should go to the hospital immediately you should never wait. Especially if you think it could be a hip bleed because the hip is such a large area you could bleed into and end up in big trouble. Now that that scare is over I am moving on to Christmas! I have been watching The Original Christmas Classics (Rudolph the Red-Nosed Reindeer/Santa Claus Is Comin' to Town/Frosty the Snowman/Frosty Returns/Mr. Magoo's Christmas Carol/Little Drummer Boy/Cricket on the Hearth) to get into the Christmas spirit and I am counting down until I go to Newfoundland, only four more weeks! Thank you all for your support and concern I don't know what I would do without all of your followers/friends!