Re: CMT is life threatening

[Guest guest]

<< I know the literature says that CMT is not life threatening. Do others

also think this is a life threatening disease? >>

In the rare CMTers who have severe breathing or heart involvement one's

health must be handled with great care, imo.

, you sound like you are taking excellent care of yourself and taking

appropriate precautions. That's all anyone can do, CMT or not. Some CMTers

MUST use a ventilator at night, or even in the daytime in order to keep

breathing and functioning.

Some CMTers are told they will need a wheelchair by the time they are age __

(whatever) - but no one can predict whether or not a person will ever need

one, let alone at any specific age. Accurate predictions about a CMTer's

future are virtually impossible. We are all so different we each need to find

out what works best in our individual situation. Whatever it takes!!

Ventilators, orthotics or AFOs, scooters or wheelchairs, eye glasses, hearing

aids, - whatever works.

[Guest guest]

In a message dated 2/2/00 1:55:18 PM Pacific Standard Time,

imagodei@... writes:

<< I know the literature says that CMT is not life threatening. Do others

also think this is a life threatening disease?

>>

I have to agree with the more you know about CMT the more you figure out that

it is life threatening in some cases. It can be a threat to any of us if we

fall and hit are heads or something.

jenny