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

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!

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

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

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

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

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

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

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

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!

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

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

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

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...

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

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

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

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

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

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!

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

So, I've been in pain for the last few days and not feeling 100% so I decided to head to the Hemophilia Clinic because there was so way I was going to let it get worse and end up in the emergency room again. I went to the clinic and an ultrasound showed that I could be still in a bit of pain from the mass as it is still being absorbed. A urine test showed I have another urinary tract infection. To be honest I think this is the same infection that I got last month but we stopped treatment once I was admitted to the hospital so I'm thinking the same infection must of came back. Either way, I had to miss work again which I really hate doing but lucky my co workers were supportive Thank god. Right now I am resting up and hopefully I will be infection free ASAP!

University of Calgary Talk

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!

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

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

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

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

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

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

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

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

So, last night the Running Room called to let me know that they cancelled my walking clinic. I was so disappointed I almost cried on the phone. He suggested I take a running class but as you know, running is not recommended for Hemophiliacs. I am so discouraged. That is all.

Marathon

So, I just signed up for a 10-week training program through the Running Room. I will be going once a week for training sessions and group walks. After 10 weeks I should be able to walk 10km. The end goal is to walk in the Canadian Breast Cancer Foundation CIBC Run for the Cure. I think the fact that it is for a charity will really motivate me and keep me going. I am also practicing for next year because we are in the process of planning a Hemophilia Walk. I'm looking forward to training I think exercise will be a great stress reliever and it will help me get in better shape. I've always been one of those people that has a hard time sticking to things but I'm praying this will not be one of them! Wish me luck!

Hemaware Article

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

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!

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!

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!

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

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

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

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?

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

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".