How I’ve Coped with Hemophilia, and Why I Give Back
Advocacy An advocate opens up about how growing up with the blood disorder shaped his appreciation for — and quality of — life.
Somehow, whenever I mention hemophilia to someone, he or she always seems to have some vague recollection of the word from grade school science class. Apparently, hemophilia occupies a common headspace amongst fifth grade teachers who must explain inherited disease and X/Y chromosomes to their 10-year-old students. Given that it only impacts around 1 in 10,000 people, I suppose we should be grateful that hemophilia is occupying headspace in the public at all.
What is it?
Hemophilia is an inherited and chronic bleeding disorder. Basically, someone with hemophilia is missing a clotting protein that is essential in the clotting process. It’s not that we with hemophilia bleed faster or harder than other people, but we bleed for longer periods of time as our blood vessels struggle to repair breaks and formulate clots.
Fortunately, for those of us living in the United States and other developed countries, current treatments allow someone like me, who has severe hemophilia A, to live with a high quality of life and with a life-expectancy that’s on par with my peers in the general population. That’s pretty impressive when you consider that life-expectancy was only 28 years old, with relatively poor quality of life, as recently as the 1950s.
My quality of life
For me, while hemophilia has played a significant role in my life, it hasn’t held me back in many of the ways people might think it would. I’ve been able to work steadily, without issue. I work out and maintain an active lifestyle without serious problems. I travel quite frequently for work and for leisure, without any significant complications.
"Fortunately, I tolerized my inhibitor during middle school, and medicine has worked effectively for me ever since."
From a medical standpoint, I’m in pretty good shape. And from a personal standpoint, I’m also in pretty good shape. In fact, this year I’m getting married to an absolutely outstanding partner. To be as healthy as I am, as professional successfully as I am, and to have a partner as incredible as my fiancé — hemophilia or otherwise, I’m a lucky guy.
That said, life with hemophilia hasn’t been a cake walk. When I was a kid, my body produced antibodies — known as inhibitors — to my medication, which effectively rendered the medication obsolete. This led to many years of bleeding episodes, a lot of time on the couch, and not as much time at school or with friends.
Fortunately, I tolerized my inhibitor during middle school, and medicine has worked effectively for me ever since. Because of all those bleeding episodes, however, I have severe arthropathy (arthritis) in both of my ankles, and I do have to be mindful about my activity, diet and rest patterns in order to prevent additional bleeding episodes.
Finding and giving help
On the non-medical side, I’ve had my share of battles with insurance companies over the cost and coverage of my medication. People with severe hemophilia can cost an insurance company anywhere from a couple hundred to a couple million dollars a year. While these battles are certainly stressful, I’ve learned how to navigate them, and I know there are resource at my disposal when I need additional support.
Now, at 31, I am the co-founder and CEO of a content agency and production house, and most our work is aimed at people affected by hemophilia and other bleeding disorders. I find it tremendously rewarding to use my skills and network to develop content and programming that benefits this community I belong to, and that I really identify with. I accept that I cannot change the fact that I, and many others, have hemophilia, but I can make an impact in how we as a community are engaged, educated, and empowered to live fully and happily despite hemophilia.