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.

Who is Naomi?

Hi, my name is Naomi. I am a 16 year old girl from Maryland. I love to read, write, watch TV, hang out with friends and family, and help others. I am a junior in one of the best schools in the state and have had a 4.0 GPA all of high school, and that includes my four AP classes this year. I was the president of my local chapter of BBG, an international youth-led Jewish organization. I am the Girl Up club president, in addition to holding various other leadership positions. I have read the whole Harry Potter series close to ten times and read 125 books just last year. I have a crazy twelve-year-old brother who won his school's geography bee as a 6th grader and a crazy Airedale Terrier named Bree who was supposed to be a show dog (that would never have worked out, she’s too crazy). I have great friends and family and enjoy going shopping, going out to eat, and seeing movies with them.

And did I forget to mention that I have Muscular Dystrophy?

I was diagnosed with Muscular Dystrophy when I was six months old. I was my parent's first child, and they became concerned when as a baby I failed to hit normal milestones, like sitting up and crawling. When they found out my diagnosis, they did not know what to expect. My doctor told them I might never walk. Since then, I have overcome expectations and limitations one step at a time. I'll talk about that more in a future post. This introduction serves to show that I am more than just the girl in the wheelchair. There are so many other parts of me that matter much more. That being said, I am starting this blog for two purposes: to show the non-disabled community what it is like to have a physical disability, and to act as a resource for fellow teenagers with disabilities. There is not a guide to being a teenage girl with a disability. I hope to change that.