Support & Care

What to expect

Myotonic dystrophy is a progressive or degenerative disease. Symptoms tend to worsen gradually over several decades. While no treatment exists that slows the progression of myotonic dystrophy, management of its symptoms can greatly improve patient quality of life. Early intervention can reduce or avert complications that sometimes arise. 

DM2 tends to be less severe than DM1 and has less impact on life expectancy. DM1 is much more variable and the prognosis for an affected individual is difficult to predict. Some people may experience only mild stiffness or cataracts in later life. In the most severe cases, respiratory and cardiac complications can be life threatening even at an early age. 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 the disease. How myotonic dystrophy affects an individual can can be completely different from how it manifests in another, even for members of the same family. It is impossible to predict how the disease will affect any one individual. 

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