nursewithDMD
03-25-2001, 03:46 PM
I am about to be diagnosed with either Miyoshi or Nonaka MD. Can anyone send information about these, or lead me in the right direction. I am finding very little.
Thanks.
Thanks.
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baw1064
04-03-2001, 12:53 AM
Hi:
I have Miyoshi distal MD. You're right that it's very hard to come up with good information on this. About a year ago I put together a website with all the information I could find about Miyoshi. http://sites.netscape.net/dysferlin BTW dysferlin is the gene that's missing in Miyoshi. I don't believe they've found the gene responsible for Nonaka yet. The MDA has told me they are now preparing a new pamphlet on the various forms of distal MD (they don't have much on there website currently). You may be able to write them and get some information.
Good luck and best wishes
I have Miyoshi distal MD. You're right that it's very hard to come up with good information on this. About a year ago I put together a website with all the information I could find about Miyoshi. http://sites.netscape.net/dysferlin BTW dysferlin is the gene that's missing in Miyoshi. I don't believe they've found the gene responsible for Nonaka yet. The MDA has told me they are now preparing a new pamphlet on the various forms of distal MD (they don't have much on there website currently). You may be able to write them and get some information.
Good luck and best wishes