"Finding My Place" - Benjamin Dupree
When I was young, I had often wondered why I was slower than other kids on the playground. At the age of 9, I was given an answer. After receiving a muscle biopsy, showing a complete lack of the dystrophin protein, I was diagnosed with Duchenne Muscular Dystrophy (DMD). At the time of my diagnosis, I was happy to finally have my answer, and I took comfort in that. However, it would take me several years to begin to realize the full extent of what that diagnosis meant to me.
I was a late diagnosis, and my DMD progressed at a slower rate than expected. When I was 15 and began to transition into full-time wheelchair use, my perspective changed immensely. I started to see how DMD was beginning to creep into my life and create barriers that kept me from participating in the activities I enjoyed the most. In the last year of high school, I quit playing in the band because, due to the inaccessibility of many high school football stadiums, I was frequently unable to sit in the stands with the rest of the band. This was a huge blow to my confidence and left me feeling alone and isolated.
When I reached college, I felt like I was lost. The feelings I had from the end of my time in high school became magnified, and I felt like I would never fit in with everyone else. Following my first year in school, at the suggestion of my mother, I traveled with her to a national DMD conference held by Parent Project Muscular Dystrophy (PPMD). Somehow I found myself speaking on a panel at that conference, and it was a life-changing experience. Sharing how I dealt with some of the struggles I faced was a fulfilling experience that helped me come to terms with my diagnosis and accept it for what it was. When I saw how much of an impact my experiences could have on others, I realized that I wanted to work toward a career where I could help others.
DMD has given me one thing that I value more than anything it has taken away from me. DMD gave me a sense of purpose. Through my involvement in advocacy, I realized that I could take my experiences and use them to help others through the very same challenges I went through.
I am thankful for being given the opportunity to serve as a Consumer Reviewer for the Duchenne Muscular Dystrophy Research Program and grateful for my nomination by PPMD. This role has allowed me to share my experience as a person living with DMD in a way that will help to shape the landscape of DMD research in the coming years.
Last updated Tuesday, July 16, 2019