Self confidence or stick my foot in it

January 21, 2002

CMT is much more common than that as you say the estimated figure are 1 in 2500

but this includes the people who have been misdiagnosed and think they're living

with some other condition.

I asked Gretchen once how this could be and she replied (please Gretchen step in

if I've got this terribly wrong) that basically most doctors aren't taught about

CMT and I'm going to add because of that lack of knowledge they guess.

This is why our awareness programme is so vitally important. As I said in

a post the other day I want to see CMT become as familiar to the lay person as

MS and that doctors do know about it.

A few months ago I had a couple of articles in the local paper about me and one

woman phoned up and she was in a hell of a state because all the symptoms I'd

spoken about were the same as her husband who was in his early forties and in a

wheelchair. He'd been given a diagnosis of some kind of dwarfism and yet he was

over six feet tall.

That is why on the bottom of all my posts I add the important thing is never to

stop questioning because I know out there there is CMT in families and they

don't know about it and I urge everyone with CMT or a condition that doesn't

make sense to them to keep asking questions - and make more people aware of CMT.

Love

Sue X

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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