When I was about a year old, my parents noticed something odd about the way I walked. After many tests it was determined that I had a neuromuscular disease.
It took us several years to get a definite diagnosis of Emery-Dreifuss muscular dystrophy (EDMD).
If you’ve recently found out you or a loved one has EDMD, you understand what my family went through. Learning that you or your child has a form of MD can be frightening and confusing. My parents wondered why I had this disease; we had no history of it in our family.
But each type of MD is caused by an extremely uncommon genetic defect that people often don’t even know they have. You can be sure your disorder wasn’t caused by anything you or your parents did, and you didn’t catch it from anyone.
My family had to make many adjustments because of my MD. We were lucky. Along with great, caring doctors, we had the Muscular Dystrophy Association to help us. From MDA, my parents got the support and information they needed, as well as help with equipment and other services. I was honored to serve as MDA’s National Goodwill Ambassador in 1987-88.
I’m grateful to my parents for not hiding things from me and for letting me be a part of discussions with doctors from an early age. Understanding my disease helped prepare me to manage my medical care as an adult. Having information about my MD also enabled me to enjoy a typical childhood with school, sports and many friends. In high school, I was in student council and National Honor Society, was a team statistician for basketball and baseball, and had an internship.
I graduated from college with a degree in communications, and I work in e-marketing at Harley-Davidson Motor Co. in Milwaukee. I’m also a member of the MDA National Task Force on Public Awareness.
I use a power wheelchair and noninvasive respiratory assistance. I’m telling you about myself so you’ll see that people with EDMD can have fulfilling, happy lives. It isn’t easy to live with muscles that grow weaker over time, but you don’t have to let MD keep you from pursuing an education, career, family, travel — anything you want.
People with disabilities have more opportunities today than ever before to develop and use their abilities. Federal law guarantees us a public education, equal employment opportunity and access to public places. Computers and technology help us to move around, write, work and drive.
As you face the challenges ahead, please be assured that we’re making progress toward better treatments and a cure. And remember, you’re not alone.
MDA National Task Force on Public Awareness