Re: telling others about CMT

[Guest guest]

Deb,

One is either born with CMT or doesn't have it at all (even though the

symptoms may not be obvious until later). At their ages, if your children are

coordinated, have normal looking feet and legs, and are physically active there

isn't much chance they inherited it. If they DON'T have CMT they cannot pass it

on

to their children.

Regarding telling others about CMT, most people really aren't interested.

They have their own demons to fight. Close friends and some relatives may become

interested as your symptoms become more obvious. I think it's an individual

choice.

" You wouldn't worry so much about what other people think about you

if you knew how rarely they do! "

Kat

Seattle WA USA

[Guest guest]

Thank you! I myself had never heard of CMT until I was

diagnosed. I wonder how to tell my children (25 and 22) since

they may also get it and/or have children with it.

By the way, my name is Deb. I am a librarian so that is where

the username comes from.

[Guest guest]

Hi Deb,

I know what you mean about never hearing of CMT before. When he

first said I had Charcot-Marie-Tooth I thought he was talking

about my teeth! Anyway I know that one of the worst things is

thinking you have passed it down to your children. My kids are

16, 12, and 10 and I think my 12 yr old may very well have it.

That is the hardest thing for me in all of this. I don't really

know alot about CMT myself, for the first year and 1/2 I just

prentended like I didn't have it because I didn't have that many

problems. Now that it's affecting me more I'm trying to learn

more. I did tell my kids about and it was hard but you will get

through it. Well good luck.

ka

[Guest guest]

ka -

Thank you! It is just such a relief to hear that other

people have the same feelings, etc.

Deb