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Hi Katie
I'm 36 now & have had symptoms since I was in my early twenties. Have been diagnosed with Miyoshi Distal Myopathy for about 7 years now. My condition is gradually getting worse - I walk short distances with an elbow crutch, stairs are impossible and I find it very difficult to get up from chairs. That said, it has just become of my life and I deal with each problem as it arises. The power of positive thinking is amazing. I am married, have two young children, work part-time & manage the house so don't let it take over your life! I'd be happy to talk to anyone who wants support or just a chat! It'd be nice to know I'm not the only sufferer in UK!!!
Suzanne
-------Original Message-------
--- In dysferlin@yahoogroups.com, "katyanihoney34" <Kjviccary@a...>
wrote:
> I feel quite alone, for a while i have known there is something
wrong
> with me i feel weak alot of the time,ihave not been diagnosed but
> think that i may have a dysferlin deficiency i have no idea what
> medical history my familyhave but am 20 years old, and feel like i
> am 40/50! what should i do to find out if i am one of these people,
> my upper body is thin/gaunt my leg muscles are big in the thighs
but
> not strong,
> tips/advice extreamly welcome!
> Katie
> Kjviccary@a...
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