Kim have you connected with a UK muscular dystrophy forum? I found one online:

On this page someone introduces themself as having MC. It's old, but maybe you can find someone through a similar Muscular Dystrophy related blog or forum somewhere. Is Myotonia Congenita very closely related to Muscular Dystrophy? There's got to be a way to find other people who have it who could give you some pertinent advice. Hank

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