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Re: Miyoshi Distal Muscular Dystrophy--extremely rare--but I got it :-) anyone else?

Re: Miyoshi Distal Muscular Dystrophy--extremely rare--but I got it :-) anyone else?

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Posted by Brad Williams on September 02, 2000 at 00:13:36:

In Reply to: Miyoshi Distal Muscular Dystrophy--extremely rare--but I got it :-) anyone else? posted by Jodie on March 27, 2000 at 21:24:47:

: I am 31 and have an extremely rare form of MD called Miyoshi Myopathy (MM). I am interested in
: learning anything about this disease, from any source. I have a few papers to read, but not much else.
: The onset was early adult and I have progressively gotten worse. I use a wheelchair when I am outdoors, but
: get around ok in my home.

: My husband and I are expecting our first (and only) baby and we are not quite sure what to expect. If any disabled
: mothers, or fathers, have any advice, it would be welcomed.

I got MM too! I put together a website a few months ago compiling as much information as I could find about it (URL
is below) I agree with everything Tom Murphy said about Google being the most useful search engine for coming up w/
info on this. It turns out, from reading the literature, that MM is not nearly as rare as people once thought, and there are
several research groups currently studying it. The gene responsible (dysferlin) was found in 1998. The inheritance pattern is recessive,
so as Tom said, your children are unlikely to have symptoms. I don't have kids, so I can't really
give any insight on the parenting aspects. My best wishes to you.



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