I often tell people that having hemophilia has been as much a blessing as a curse in my life. I understand many would not make the same statement, and I understand my circumstances are far from the norm in this community. I was born in the late 70s, when the contaminated blood supply was beginning its assault on our community, but was not diagnosed with mild hemophilia until I was 10 years old. I was lucky to avoid that crisis, just as I was lucky to avoid significant long-term effects from the typical bumps and scrapes that kids have, which for me included having stitches three different times without getting any treatment for my excessive bleeding. While this frustrated my mother at the time, she now realizes that my younger brother and I were lucky to have our diagnosis delayed until the late 80s.
Despite the fact that my symptoms weren’t obvious to most, after my diagnosis I felt the psychological weight of being “different” than other kids my age. I attended hemophilia camp in Northern California for the first time as a 14-year-old and, with the exception of a break during my time at college in Southeast Idaho, have been involved in the community ever since. That experience, of being surrounded by other kids like me, was truly life-changing.
As subcutaneous treatment and gene therapy essentially convert cases of severe hemophilia into mild cases, I find myself concerned that the programs that meant so much to me growing up will lose their value in the eyes of those not directly affected by them. While I do not have physical restrictions and only infuse a handful of times a year, the social and psychological issues associated with having any chronic condition will not go away. The programs put on by this community have had enough of an impact on me that I spend much of my summer ensuring that they continue. I am now a co-director of the summer camp in Northern California, and President of the Board for an organization called Disabled Adventure Outfitters, or DAO, which involves a week of whitewater rafting for teens with bleeding disorders.
My dad still remembers me coming home from camp for the first time, ecstatic that I had met a bunch of others who were “just like me,” and that is a need that will still exist going forward. As we overcome many of the physical issues associated with bleeding disorders, we can’t forget about the psychological effects that come with being “different.” I fought alongside a team of others to keep DAO alive because we understood the value it has for those who have been taught by the world that they must limit themselves because of a genetic disorder. My involvement in that program over the years was key in giving me the confidence to cross a big item off my bucket list, when I went skydiving in Hawaii in September.
So to all of you who will see much improved health as these new treatments reach you, congratulations and welcome to the club! I look forward to sharing the experience with you and remind you all of the importance of passing our traditions and lessons on to the next generation. Though our physical future looks bright, our psychological future must always be tended to.