So, I spent the weekend in Toronto for the Canadian Hemophilia Society National Youth Committee retreat.
The weekend was all about advocacy. We had 25 participants and everyone was friendly, kind and seemed very interested in getting involved.
One of the first presenters was David Page, the fearless leader of the CHS. He told us about WHY we are involved, WHY are we doing this. His presentation was great, perhaps my favorite of the weekend. What I took away from it is that we need to stay involved to ensure we have a safe blood supply, access to said blood supply and that our clinics are running as they should be.
A huge part of these conferences are what happens after the presentations. Eating supper together and hanging out gives us a chance to talk about our own experiences.
I love spending time with the Youth Committee its the only place where you can discuss which pain killers you like best, talk about all the different hematologists and argue about who has the biggest chart. It's so different being around people who are just like me. Well almost just like me, the boys gave me a demonstration of how they infuse their product. I was so impressed and so jealous. It took them about 5 minutes to give themselves an IV an infuse. The product they use is recombinant so it contains so human blood product and it is a concentrate so its a small little vile. Within minutes they bring their levels up to normal and are on their way again. I asked them how it felt and they said they felt no different.
I am so jealous because for me to do that takes a trip to the HTC, an exam from a Hematologist, often times diagnostic imaging, starting an IV, Benedryl, and 4 units of Fresh Frozen Plasma which takes at least 4 hours at the best of times.
I feel like my life would be completely different if I had a product.
At these conferences we also talk a lot about research and advancements in the treatment of Hemophilia and this is another area that makes me jealous because while other factor treatments are moving forward there hasn't been any progress with the treatment of Factor Five since it was first diagnosed in 1944!
Octaplas or Octaplasma is a new treatment I am hoping will be effective for me but it is still old fashioned compared to the some of the other treatments.
Overall, I had a wonderful weekend, I laughed and enjoyed every minute of it! The goal of the Hemophilia society is to ease the pain and suffering of those living with bleeding disorders and this weekend certainly made me forget about Hemophilia.