Have you ever met anyone with Muscular Dystrophy (MD)? Maybe not, as MD is considered a “rare” disease impacting a little more than 50,000 Americans and 1,500 Hoosiers. So while it’s rare, the other reason you may not know anyone with MD is because they usually lose the ability to move on their own, and often end up homebound.
Muscular dystrophy is a disease in which the muscles that control movement (called voluntary muscles) progressively weaken. Genetic mutations interfere with the production of muscle proteins necessary to build and maintain healthy muscles.
It’s a complicated disease that varies significantly depending on the type and form. It predominately effects men. Many people who have MD will eventually lose the ability to walk. Some may have trouble breathing or swallowing. Some people are born healthy and are athletic in their youth then diagnosed later in life, after their muscles begin to weaken and degenerate. They go from an active life, to one fully dependent on assistive devices and caregivers. Making the emotional challenges just as difficult as the physical changes to which they have to adapt.
MD can appear as early as infancy or as late as middle-age or later. Because its form and severity vary radically, it can be difficult for families to know what to expect when they have a family member diagnosed. Each type differs in the muscles affected, the age of onset, and its rate of progression. Some people with MD enjoy a normal life span with mild symptoms that progress very slowly; others experience swift and severe muscle weakness, dying in their late teens to early 20s. The fear of the unknown can be overwhelming as impacted families have no idea on how to plan for the future.
Since the disease is genetic, a history of MD in the family increases the chance of an individual developing the disease. Several families we serve at MDFF have not one but multiple children or siblings that have MD. There are a few muscular dystrophies that aren’t inherited at all and occur because of a new gene abnormality or mutation. Making this diagnosis very confusing and unexpected for some families.
There is no cure for MD, but medications and therapy can help manage symptoms and slow the course of the disease. Thanks to advances in medical care, people with MD are living longer than ever before!
Our vision at MDFF is to help the MD families in Indiana maintain mobility and independence, thereby increasing quality of life. Every life is worth living and living to its fullest!