Muscular Dystrophy Community
How bad is Emery Dreifuss muscular dystrophy?
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Muscular Dystrophy (MD) refers to a group of more than 30 inherited diseases that cause muscle weakness and muscle loss and eventually cause you to lose the ability to walk. Discuss topics including Duchenne muscular dystrophy (DMD), other types of MD, symptoms and ways to improve quality of life.

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How bad is Emery Dreifuss muscular dystrophy?

Hey, I have a buddy that was diagnosed with Emery Dreifuss and I was really curious what I can do to be there for him?
Tags: emery dreifuss, Muscular dystrophy
How very sweet of you.
Any and all types of muscular dystrophy are hard to deal with.
Your muscles may either slowly or quickly deteriorate. It makes simple things such as opening a jar, carrying groceries, etc very difficult.
Moral support and belief in what your friend is going through can be a big help in itself.
My younger brother went through a terrible time in his teens. He was diagnosed with fascio MD, but 99% of people wouldn't believe that he actually had a problem.
His teachers ( esp gym teacher was the worst ) and they kept pushing him to do more. He finally dropped out of school because of it.
Sometimes just listening to him may be enough.
Watch him for signs of fainting, heart troubles, etc. Any odd symptoms should be reported to someone who can help him.
Sometimes people with MD may become upset if you offer too much help. They know they can't do some things...and sometimes they will take your helpfulness the "wrong way ". My brother gets angry if people offer to help him down the stairs...he says " I'm not dead yet".
So just sort of " feel your way around " with your friend, and back off if he gets a hurt look on his face.
Offering to mow his lawn, walk the dog, or chop firewood is ok...I just wouldn't offer to wash his hands for him.
Hope this helps, and sorry that it took so long to reply.
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