Today, I am sitting at home with my wonderful wife, enjoying our warm house while the last snow storm of the winter (hopefully) is wrapping up. I'm still sore from my pulled hamstring and subsequent bleed but I'm recovering. It would seem like today is turning out to be pretty wonderful but there is something different about today. It's World Hemophilia Day.
World Hemophilia Day is about spreading awareness because it looks vastly different from country to country. In my home it means that I treat prophylactically, and when I get an injury I infuse more. There is still pain and swelling, and even a few days on crutches, but it gets better. My pain is only temporary. This is pretty typical for most hemophiliacs in the U.S., and other developed nations.
That isn't the case for many others around the world. In fact, about 25% of the world's hemophiliacs use over 75% of the medication. Treatment isn't available to most people with bleeding disorders in developing nations, and their suffering and pain don't end. I've witnessed the pain first hand and it's crushing to know that these young men and women with bleeding disorders have so much to overcome. I often feel a sense of "survivor's guilt" that I was fortunate enough to be born in the United States and have access to treatment, while so many others were never afforded that opportunity. I feel even more guilt during those moments when I loathe having hemophilia due to pain from a bleed.
The only way I have found to tolerate this guilt is to harness it. Use it to help educate others about the disparity in care, and to help reduce that disparity. I think of how strong our bleeding disorder family is and hope that when united, we can continue to make a difference around the world.
Thankfully we already have organizations helping in developing countries. Save One Life, The World Federation of Hemophilia, and the Novo Nordisk Hemophilia Foundation already have well established and effective programs. But these programs should just be stepping stones for more. As a community we can demand more from manufacturers and from ourselves: to create factor donation programs, to spread awareness about what hemophilia is really like, and to advocate for our blood brothers. Please support the above organizations in any way possible. Share our message, educate, and donate if possible.
I want to share an amazing video that my friend Patrick has produced for the World Hemophilia Federation. This video gives a tiny glimpse into hemophilia in the developing world and the everyday struggles their communities face. Let these young people linger in your mind and find your passion to help them. Let's spread awareness today that will undoubtedly make a difference tomorrow.