Steve,
You may already know, but a good source of info on FSHMD is
www.fshsociety.org
For communicating with other FSH-ers you can try
http://www.fshfriends.org/
And MDA has online chats at http://www.mda.org/chat/calendar.html
Admittedly, I haven't visited any recently/regularly - just know of their
existance.
I am 33, from Sydney and coping well with having FSH. Luckily, I am
essentially without pain or medication but I think that is mostly due to
luck rather than anything else. I recently got a reality check after
falling over (for no apparent reason) and breaking my tibia & fibula -
apparently my lack of strenuous exercise has caused osteo****osis and my
bones aren't as strong as they should be. Having said that, it could have
been much worse.
I know a few other people here with FSH but to my shame I haven't
contacted
any of them since last year. I need to get onto that....
Happy to share more, but not at the moment and probably not in a public
forum.
Smitty
<natersgrampy@[EMAIL PROTECTED]
> wrote in message
news:1187360523.939258.34340@[EMAIL PROTECTED]
> Hello all ! Just wanted to say hello to all of you members and ask
> if there may be some others in this group who have FSH type Muscular
> Dystrophy ? Would like to hear from you !
> I'm a 56 year old Male from WI , and have three adult sons also
> having FSHMD .
> Be glad to chat with any of you to compare symptoms,medications, how
> the progression of the
> disease is going for each of us? Any treatment plans you may be
> under,or clinical trials you are
> participating in - or have been in ? How is the disease affecting
> your quality of life ?
> Thanks for listening ! Steve
>
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