Care recommendations for patients with myotonic dystrophy

Published in 2018 is a consensus based approach for the myotonic dystrophy patient community. This gives general guidelines on how to approach, test and intervene in patients lives to achieve the most optimum outcomes.


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Feeding Problems


Many people have contacted us and have expressed concern and interest in feeding issues for people with CMD or Myotonic Dystrophy. Some case studies might give some insight into these issues. Your clinic may not have this updated information, but it’s important to take these issues seriously and discuss them with your doctor!

What is clear is that feeding is a very difficult issue for many people with myotonic and congenital myotonic dystrophy. The regular rules and concepts that people think about can not be applied here. Kids and adults have muscle problems associated with chewing and swallowing. Apparently with certain individuals there are very intense problems with the digestive system, as well. Most doctors will never see a case of myotonic dystrophy and even many experts rarely see a case of congenital myotonic dystrophy. So the resource base on which parents can draw from is virtually nil.

The problems with congenital myotonic dystrophy are compounded by the onset of the adult form, for most patients this occurs in the early teen years. Thus, there is a combination of both the congenital and the early onset of the adult form that might be the cause of these problems.

Thus, the parent is alone to deal with a very difficult situation that they do not understand. Here are a few cases that might shed some light on these difficulties.

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