Chat room

November 14, 2001

Hi all

First of all I would like to thank Gretchen for arranging the meeting with Paolo

on line and for Paolo for agreeing to take part in it.

Now my own thoughts and feelings. It was wonderful to be able to share, talk and

discuss various aspects of CMT and I for one learnt a few things I didn't know

about.

But more importantly than that. I came away with hope. I know we've all felt at

one time or another that CMT is a definite no-no condition and I'm sure that at

sometime or another we've all be mistreated and abused by the medical

profession. But I feel happy and positive because after tonight I know there is

hope and there is a way forward for all of us. Rehabilition of our diesease

takes understanding and to quote Paolo 'love'. That's two things we all have. We

can shout and moan about our condition but I'm sorry folks it's up to us to do

something about it for our sakes and for our children and grandchildren.

I thought it was sad that not more of you could have joined in but I know that

couldn't be helped but come on guys we've all got to pull together, we've got to

shout about CMT and educate our doctors about it. One thing Gretchen said and

Paolo agreed was that we who have CMT are the best doctors (probably total

misquote) but that was the gist of it and we are, maybe at times we have to

'heal' ourselves but thanks to this group, to support groups we're not on our

own.

Thanks again Gretchen and Paolo for your support, understanding and love and for

taking the time out to arrange a 'chat'

Love and hugs

Sue.

PS I think the chat room is a wonderful idea and I for one will be happy to sign

in when I'm working on line.

The important thing is never to stop questioning.

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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