[misc.handicap] Looking for some answers

Ralph.Puccini@f501.n202.z1.fidonet.org (Ralph Puccini) (07/19/90)

Index Number: 9284

Let's see. An introduction. My names Ralph Puccini. I was diagnosed 
as having CMT at the age of 18(19 years ago). CMT is in long version;
Charcot MArie Tooth Diease. For those you you who have it no 
explanation is needed. For those of you that don't; in a nutshell it 
is a Neuro Muscular Atropy diease. It starts in the limbs and works 
inward. Most of the time it does little more than put us into 
chairs, braces, some orthopedic device. Not much that can be done 
for hands. It doesn't kill directly... But am begininf to understand 
how it could kill indirectly. Oh well... 

What i'd like to find is someone with CMT. I've never met anyone but 
have talked via phoen with one man. And no of a woman up inNorthern 
California that has it, (we exchanged a few letters). It would be 
interesting to be able to share some insights. There's not much 
known about this one. Which is either because it's not a life 
threatening form of MD or because it is supposed to be somewhat rare 
and test cases are hard to come by.(1 in 500,000)

I remember i went to the UCSD medical library once in the earlier 
seventies and looked up CMT. There was only about a page of 
information. I guess what I'd ideally like is to form( if there is 
not such a thing already ),a CMT group. Maybe publish a newsletter 
that would answer questions and generally make us feel less 
forgotten.

I understand that this echo is for the discussion of issues and 
problems as related to the disabled person. I don't really know if 
it is acceptable to try and generate a specfic response from a 
disabled group and use the echo as a meeting place. So if this is 
aganist Echo rules then anyone with Charcot MArie Tooth Diease may 
contact me at the following address.

Ralph Puccini
2783 C Street #08
San Diego, California
92102

thanks

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