Since I was 6 years old, I’ve been living with the impact of having Duchenne muscular dystrophy. When I was a kid, I loved building with Legos. I liked taking things apart and figuring out how to put them back together. If there were electronics in the house, I…
Discussion
The Muscular Dystrophy Association (MDA) is hailing a recent U.S. federal court ruling that blocks, at least for now, the implementation of new restrictions that would have made it harder for many people with disabling conditions such as muscular dystrophy to qualify for Medicaid, the government-run program that…
Discussion
Two interconnected themes — community and hope — dominated the conversations at a recent gathering of people living with neuromuscular diseases. Lily Sander, MDA National Ambassador, speaking at MDA Engage: Dallas. (Photo by Tara Haelle) Lily Sander, national ambassador for the Muscular Dystrophy Association (MDA), hit on those…
Discussion
One of the greatest experiences of my life is raising children and watching them grow. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. I have witnessed many beautiful moments in my parenting journey. In my…
Discussion
The first step to figuring out the right equipment for someone with a neuromuscular disease like muscular dystrophy is to understand that person’s goals, environment, and changing needs, a pair of experts said. “There’s a lot of equipment out there,” said Katie Metheny, an occupational therapist based in the…
Becoming educated and informed about muscular dystrophy is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your muscular dystrophy journey.
There is no cure for muscular dystrophy yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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