Re: CMT and Pectus Excavatum

April 9, 2003

In a message dated 4/8/2003 7:30:16 PM Pacific Daylight Time,

elnsie@... writes:

> Jim Nash's letter scares me because it would

> mean our son is destined to have the disease

Please keep in mind that most doctors don't have enough information about CMT

and just repeat what they were tought.

Over the years I have been told that I had a high palate in my mouth from

CMT.

I was also told that CMT was caused by sexual transmitted disease.

Once I was told that CMT is not inherited.

I was told that CMT is caused from family members in the south marrying each

other.

I can go on and on about the mistakes doctors have made.

But I won't.

I do have a good doctor that is very knowledgeable in CMT . After I asked him

to he checked my mouth and said that I don't even have a high palate.

I know I don't have a sexual transmitted disease. My parents didn't have a

sexual transmitted disease either. My family was not from the South and I am

sure CMT is inherited.

So what I am saying here is don't believe everything you hear, and if it

comes from a trusted well educated physician remember CMT varies in everyone.

April 9, 2003

Well said, . I would also add don't believe everything you read -

there is still misinformation on CMT the Net in some places. I would

also suggest second opinions on health issues too. And just think about

all our members, what a diverse group we are with symptoms and

types. Once again I would like to suggest reading the CMT book

" Rehabilitation Management of CMT " as well as subscribing to authentic

CMT newsletters and the magazine. ~ G

MommyToAdam@... wrote:

> So what I am saying here is don't believe everything you hear, and if it

> comes from a trusted well educated physician remember CMT varies in everyone.

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