Re: Can CMT be Fatal?

[Guest guest]

Hi Kay,

Thank you so much for sharing your story with us again. Yes, it is SO

important that we * know * 'all we can' about CMT. Not just to sugar

coat CMT as limited 'only to feet and legs' as I have seen on some

sites, but symptoms that can go further and that may be dismissed by

doctors. Even if 'fatalities are rare', anyone with CMT should be aware of the

fact.

While we are all different, and our unique genetic codes are

different, it does make sense to have a positive 'awareness' of the

total picture of CMT. I thank you for your gracious spirit and

courage to live in a positive light while managing your CMT symptoms.

Gretchen

[Guest guest]

Well, I am still alive.

Caroline

[Guest guest]

Thank you, Kay, for taking the time to tell your story for the benefit of

all of us who are new to the group. It's valuable information.

I especially appreciated the detail on exactly how you feel when you are having

trouble breathing. (At my last doctor's visit, I did explain that I have more

difficulty when I'm tired, stressed, or my stomach is full. The doctor told me

that if my diaphragm is weakened, it will not get better with rest. If it's

weak, it's weak. So hearing your detail does help me. Thank you.)

Kay, may I ask the age of your sister when this happened to her? (if you

don't mind sharing)

Also, Gretchen, is there any information posted on the risks associated with

carbonated beverages that Kay referenced? I took a look at the group site

and did a Google search, but didn't find anything. I would be very interested

in reading the research on this subject. If you know where I might access it,

that would be great.

Thanks again, Kay. Your message is important and helpful.

[Guest guest]

Hello ,

Thank you for your response. passed away at 57.

Kay