Re: sharing CMT experience/awareness

[Guest guest]

,

Come on out!!!!!!!!!!!!!!!!!!! You have no idea how many people have

symptoms and have no idea what they mean. You have no idea how many children

feel clumsy, dorky, embarrassed,stupid, inadequate, etc etc because they have no

name to give to the reason why they can not be the super star in gym class.

In my church my husband shared with our Sunday School class about the

hopes of the vitamin C therapy helping. Now keep in mind, I am 57 yrs old., I

have been in this church with these same people for years thru 2 triple

arthrodesis surgeries and walking with a cane on and off the stage as I play in

the

church orchestra. It is amazing that people that I talk to and see all the time

did not know that I had a problem. DUH!! I guess they did but not what. I

have told anyone who asks or is close to me however. (It is a big church)

My point is that after this open sharing from my husband I have been

getting calls from people that I have not spoken to directly asking me about my

disease because their neice, their nephew, their son, etc. etc. has a problem

similar or it sounds similar and how do they find out. The key is " AWARENESS "

and education. This site is great but one has to know it exists first in most

cases.

Therefore, COME ON OUT MY FRIEND. There is alot of good you can continue to

do. Take care and God Bless You and all.

Candy

[Guest guest]

Candy,

Thank you for the input! I felt all of those things as a kid. I'll never forget

my Dad telling me when I was 10 why he walks funny, his hands look like " claws " ,

& why he has chicken legs (before we knew what to call them). He " came out " to

me because he knew that I was showing symptoms. Then he told me that I have CMT

too. Which was why I couldn't keep up in sports, why I was clumsy, why boys

shoes fit better (how embarassing - but it was before we knew more) & that I'd

pass the gene to my babies, etc. What a tremendous blow to a kid's self esteem.

But I'm glad he told me, because it brought us closer, explained a lot & we've

learned together. In a way, I'm blessed that I have so much family w/ CMT (8 of

us). We help eachother. I guess we've already started a support group. LOL!

Coming out of my shell is only partially about CMT, the other is I'm a little

shy (until you get to me, then you can't shut me up!). My friends know about my

CMT. Only 1 of them has been difficult. She can't understand my fear of falling

(we went camping once & I wouldn't cross a creek w/ slippery rocks - that's just

asking 4 trouble! Duh!). I've learned to take her w/ a grain of salt. My

closest friend & neighbor, , is great. She's in nursing, so not only is she

interested in learning about CMT, but she helps me if there are things she knows

I can't do. My husband has been the best too! I knew if he could accept my CMT

& the fact that we might have kids w/ it - then he was God sent! It sounds like

you have the same kind of hubby, Candy! You're right on the awareness part too!

That's why I think is a great start. I know it's been a huge help to me!

Thank you again for your post & words of wisdom! You take care & God Bless too!

=)