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/.