Re: Finding Out the Truth about Charcot Marie Tooth

[Guest guest]

Dear ers,

I contacted the newspaper reporter about the fatality issue. Her

response is below. The first sentenance makes absolutely no sense to

me. ~ Gretchen

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Dear Gretchen,

Thank you for writing. Yes, the possibility of fatality is why I

wrote that it is generally not fatal.

I have heard from a half-dozen sufferers or relatives of sufferers.

That is about twice the number of readers who write or phone about

an article.

I congratulate you on your long management of the disease and wish

you good luck with it in the future.

Happy new year.

Pohla

PG Consumer Health Writer

Pittsburgh Post-Gazette

[Guest guest]

Hi Gretchen,

In my opinion she makes sense and in a way is correct in her use of the word

" generally " to modify " not fatal " - in general, CMT is not, although it

certainly can be in highly pronounced cases. I think the problem is that there

is not a good general survey on types of CMT and how it is manifested, making it

hard to say if involvement of the nerves impacting the heart and lungs is rare

or not rare...

In that sense it is good to read that CMTA is funding a localised small

scale survey in PA to try to get a handle on some of the statistics. I

would have hoped that the NIH would do some of this work, but it is good

someplace is.

Best wishes,

Donna from London