Granddaughters concerns about CMT

[Guest guest]

I was talking to one of my granddaughters tonight on the phone (her dad has CMT)

and she said " Grama, am I going to get CMT? She is 13 and you know how

concerned they are of everything at that age. What do I tell her? I figured

that I'd get advice from some of you who have been there. Thanks, Stevie

[Guest guest]

I can not offer advice from being in your situation, but I can tell you what

I would liked to have heard at that age. I wish that I would have been told

about CMT, what kind of disease it is, the different effects it can have on a

person, and what things can be done to help slow the process of deterioration.

Maybe just explaining to your granddaughter that you have no way of knowing

whether or not she will have it, unless she is tested for it, will help her feel

better about it. I was never even told about CMT until I was an adult and

showing expressed symptoms in my hands. And, even then, I wasn't told much by my

family. Pretty much everything I have learned about it, I found here at .

:-) Just try letting her know that it is really up to God whether or not she

develops visible characteristics of CMT. Also, let her know that it is possible

for her to have it, but not show any visible characteristics. I think that

the more you inform young ones about CMT, the better they become at handling it

positively and managing the stress it can cause. Hope this helps some,

[Guest guest]

I would offer to get her tested when she is older. For now tell her not worry

until she has a reason to worry. Keep her posted on all the current research.

Just a few cents worth of advice. I don't really know the answer.

[Guest guest]

Well, since I was 9 or 10 when a doctor told me and my mother that I had

CMT - I'd say keep it simple. I didn't get the name idea of the disease

- you know " Charcot Marie Tooth " - but maybe you can explain those 3

men founded the disease after research over 100 years ago in France. But

I got the 'info' that it was about my feet (actually, the doc also

called it peroneal muscle atropy then) It is genetic, some have it, some

done.You can give your grandaughter a brief lesson in genetics, be

honest, and explain a bit about how CMT effects everyone differently.

Draw a simple diagram of how CMT is inherited, or print off one from the

an internet site. Perhaps she sees other family members with it and is

simply worried. You also might want to get a copy of " Aunt Scarlett's

Farm " , Wheeler's book for kids about a kid with CMT. For updates

on that go to the http://cmtworld.org web page and click on 'for kids'.

~ G

[Guest guest]

Hi, , thanks so much for your reply. I think you are right. When my

sons were diagnosed with CMT during their early years ( 8 and 14) we weren't

told too much, just the diagnosis. They grew up thinking they were going to die

at an early age, and I didn't even know they thought this. It altered the way

they looked at life and their choices. They developed a " live for today "

attitude and it was awful, for them and for us, their parents.

I am going to print your response and send it to her and talk to her about it

all. And I know she is learning alot from her dad about hanging in there.

Thanks again,

Stevie

[Guest guest]

Dear Gretchen, thanks for your reply about my granddaughter as well. I am going

to try to get the book. I don't think my son wants his daughter tested because

he doesnt' want her to worry all her life like he did, and I have to respect

that. I would want to know if it were me, but we are all different. When he is

over with his surjury,(not scheduled yet) I hope he will try the Vit-C. Worth a

try. Thanks, Stevie

[Guest guest]

Stevie,

I appreciate your thanks. ) I really hope that my previous reply helps

her to feel better about her concerns and also about managing CMT stresses and

tribulations. Best of luck,