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Hi Elaine
It's always comforting to fing people a bit nearer to home with similar circumstances. I'm in Surrey, England. I am 40, married and have 2 young kids. I work part-time. My MD started at around the age of 21. I walk around the house using one elbow crutch (although at the moment I am confined to the sofa as I fell and broke my foot!). When I'm out I use a manual wheelchair. This was my decision as I feel it gives me a little exercise but means I can do things like go shopping, pick up my kids from school, play table tennis, ice-skate etc. I am under Kings College Hospital, London, although my diagnosis was obtained with the help of Newcastle.
This thing can be a pain in the bum at times but it only compromises your life a little ... I still have a wonderful life... it just takes a bit more organising!
Take care
Suzanne
----- Original Message -----From: Elaine ByrneSent: Friday, June 26, 2009 7:58 AMSubject: [dysferlin] dysferlin
Hi, my name is Elaine. I am 35 years old and from Ireland. I am Liam's sister, who has also joined this website. I hav e had myopathy for the last 10 years and have recently being going for testing. I have had genetic testing done in Newcastle, England and the results have shown that i am missing the Dysferlin Gene. I have weakness in the legs and now arms and back. I would like to get in contact with any other suffers out there who also has this. i would like to know how limited other people are and what limbs of their's are affected.Hope to chat soon.Elaine.
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