What is Myotonic Dystrophy?

Myotonic dystrophy (DM) is a multi-systemic inherited disease that affects at least 1 in 2,100 people or over 150,000 individuals in the US alone (Johnson 2021). Although often viewed as a muscle disease, individuals affected by DM may have skeletal muscle problems, heart function abnormalities, breathing difficulties, cataracts, issues with speech and swallowing (dysarthria and dysphagia), cognitive impairment, excessive daytime sleepiness, or diabetic symptoms. Any single individual is unlikely to have all or even most of these symptoms.

Myotonic dystrophy is one of the most variable and complicated disorders known. The systems affected, the severity of symptoms, and the age of onset of those symptoms vary greatly between individuals, even in the same family. In general, the younger an individual is when symptoms first appear, the more severe symptoms are likely to be. However, prognosis is as variable as the symptoms of this disease.

New to DM?