Re: Self confidence or stick my foot in it

[Guest guest]

In a message dated 1/20/02 4:23:23 PM, sue@...

writes:

<< 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. >>

In addition, to add to the figures, there are still so many people who have

not been diagnosed at all. My grandmother, mother and one aunt are not

included in the figures because they were not diagnosed. Every day I bet

there are families who suddenly find out there is CMT in the family when one

person finally is correctly dxd. Then they realize why so many of them were a

bit clumsy, or had weak ankles, or funny-looking feet, etc. In many families

the symptoms are so mild no one knows to find out what is wrong, Then one

child (or adult) is more severely affected than the rest and gets a dx.

Kathleen

Seattle USA

http://www.icewindow.com

[Guest guest]

Maybe one way to spread the word is go to sites such

as Discover Health, they have a channel on the cable

and all of ask about CMT and why it isn't included in

their references and diseases.

Susie

--- Sue Horder-Mason

<sue@...> wrote:

>

> 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.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

> " I Thank God for my handicaps, for through them, I

> have found myself, my work, and my God. " - Helen

> Keller

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

oh, wow! even more common than that...

I had no clue how common it was, just using Susie's

view which said 1 in 2500....

so CMT is really common, exactly why it's not rare...LIKE MY NOT SO SMART

DOCTOR...TOLD ME...NOT RARE...

grrrr.....thanks tho i was wondering how common!

shannon

On Mon, 21 Jan 2002 00:19:48 -0000 " Sue Horder-Mason "

<sue@...> writes:

>

> 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.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

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

> myself, my work, and my God. " - Helen Keller

>

>

>

>