Muscular Dystrophy

My official diagnosis is congenital fiber type disproportion (CFTD), a rare form of muscular dystrophy. Many of you may be wondering what exactly this disease entails. The truth is, there is not really a definite prognosis for CFTD because it can have a wide range of severity. I do exhibit many of the usual symptoms, including muscle weakness, scoliosis, and susceptibility to respiratory infections. People with CFTD have recognizable facial features as well, such as a long face and high palate. I am fortunate enough to have a form of muscular dystrophy that is not progressive; instead, the more I work to improve my stamina and strength, the better I will get. So that is what I do.

The doctors at Johns Hopkins have always been fantastic, but even the world-renowned experts can make mistakes. They said that I would never walk. Luckily, I proved them wrong. When I was young, I moved around by scooting, which means sliding around in a seated position. I eventually learned to walk using a walker for support. I still remember the first time I walked by myself; I must have been about 4 or 5 years old. I had been walking between two couches, holding on for dear life. But eventually I worked up the courage to let go, and made it to the other couch independently. From then on, I was unstoppable.

I am also fortunate enough to have the continuous support of the Muscular Dystrophy Association (MDA). This amazing group works tirelessly to improve the lives of people with muscular dystrophy. They sponsor clinics, run amazing camps, and most importantly, perform research for a cure. They have formed many different drugs to help slow the progress of many progressive forms of muscular dystrophy, but their ultimate goal is to cure muscular dystrophy altogether. I cannot thank them enough for everything that they do.