Re: genetic testing for family members

[Guest guest]

Elinor,

When I had been living with CMT for a while I asked my young adult aged children

if they wanted to be tested.My oldest said No because he would worry about it,

the youngest son said No because there'd nothing they can really do about it,

but if I start falling and doing clumsy things, I'll think of you mom and then

I'll know I've got it!

20 years later it turns out that my oldest does have it. His feet started

hurting so bad he could hardly walk and went for test after test.Finally they

did an EMG and as he sat in the Drs office, he could read what was on the paper

in front of the Dr. He then told the Dr that his mom has CMT.

The Dr said why didn't you tell me sooner? We could have avoided all those

tests. But my son said he didn't think that's what it was because he was in so

much pain and I never had any. Well, I cried and felt so guilty because in a

way it was my fault that he had this. He said that he thinks that he'd be ok

because he could see how it didn't stop me and I still had life and he thought

he'd be ok too and he is.

The main thing I think testing would do would be to prepare them for the

possibility of having it. Also, knowing would help them choose a career. It

would be good not to have one where you are on your feet a lot. My son had just

bought a bi-level home before he found out and the steps are already getting

difficult. If he had known he might have bought a ranch type home.

I don't know if his children have it .So far they seem very athletic...much more

than I ever was.I'm sure he does not regret having children even if it turns out

that they do have CMT.

It all has to be an individual thing. Everyone feels differently. Good luck,

Sue

[Guest guest]

Hello,

I believe children should be tested as early as possible so things can

be done such as surgeries, etc. Also learning to deal with it the earlier the

better. It is individual---However, four of my five children have been tested

2 of the four have it. My fifth child will be tested in the spring around 6

mo. of age. They all deal with having/not having cmt differently as they are

individuals. None of them sit and worry about it--they accept it and move on.

Thanks

Heidi

[Guest guest]

After my first son was diagnosed I just couldn't bring myself to have the

genetic testing done on my other kids. I couldn't handle anymore bad news. I

crossed that bridge when I got there.