BOWEN: SIMPLEX
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I was born with Epidermolysis Bullosa Simplex. I quickly realized that I could not run for as long or participate in field trips like my friends. I vividly remember numerous doctors reading my medical profile and mispronouncing Epidermolysis Bullosa. Some admitted they had never encountered the disease, in person or in a textbook. I've always known that EB made me different. As I've grown older, EB quickly transformed from a physical to mental game. I became more worried about if the shoes I wore to accommodate my skin disease were "as cool" or "fit in" with my friends who wore shoes I knew I could never wear. I became self-conscious about limping and disliked feeling pity from those who wanted to help me.
But, when I turned eleven, I spent a week of my summer at Camp Wonder, a summer program for children with rare diseases. After meeting other campers whose subtypes of EB were much harsher than mine and being inspired by their optimism, my perspective on my skin disease changed. EB no longer made me different but instead, unique. When I entered high school, I learned that because EB is so rare, there is no real incentive for politicians and pharmaceuticals to invest in what I believe is a truly beautiful community and family. So, after years of frustration with abandoning physical activities, I decided my high-school career would revolve around proving EB wrong. I am Co-Captain of my school's Congressional Debate Team and Co-Editor-in Chief of my school's newspaper because I want to prove to myself that despite being disabled, I still have a voice. Every summer, I research potential antibiotic treatments for EB at USC. However, by far, my most meaningful experience has been leading Little Hands Make a Big Difference. When I first founded this organization, I posted articles about EB on a website and hosted a Poker Fundraiser to benefit an EB charity. However, within a few years, seventy students from three school districts joined my cause. I taught them about EB and how the disease represents the need for more representation of the rare disease community. Together, we partnered with an apparel company in Los Angeles to host clothing sales and donate those proceeds to fund critical work in the EB space. Through hosting fundraisers, legos and book drives, and even speaking to Congresswoman Young Kim, I strive to make EB known. -Bowen |
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