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Welcome Sharon

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Hi Sharon,

Welcome again to . And thanks for your introduction. I was

diagnosed as a child with CMT - then later in my teens and 20's and more

neurologists (!) diagnosed with a few other conditions; however, it

always came back to CMT after the newest barage of 'tests'. I just grew

up and lived my life without alot of thought to CMT. Then in 1999 a

friend suggested I start a positive-experience-sharing group via the

computer, and well, our 4th anniversary of is this Sept!

A little about me, I have no blood siblings, and both parents were

without CMT, although they were never tested. I am a toe walker and wear

orthotics in my shoes to help with gait and balance. I am 49, my

passions are numerous: artwork, my dogs, my garden, travel, etc. I work

as a writer, so sometimes my 'other jobs' have to come first! But, I am

also continuing my work with the Foundation to increase CMT

awareness - especially among the press and un-enlightened medical

community; also raising funds for our projects; our website has been

redesigned and I will post when it's 'unveiled'!

I hope you find help, hope and inspiration here.

~Gretchen

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  • 2 years later...
Guest guest

welcome Sharon!!!! I too was a clumsy child, a " bull in the china closet " is

what everyone called me. I lived on a small faarm and I did well raising

cows and gardening. I was in my forties when I finally got diagnosed. Your

daughter should know that she can do anything she zsets her miond to. And don't

be nervous her in this group we are all here to reach out and we are not here

to make you nervous. you will learn lots from gretchen qwho keeps us up on

rezxearch and from members as they share what does and doesn't work for them.

Again welcome Cathleen in Arkansas

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Sharon, Hello, Welcome to the group. There is a lot of info here for your

daughter. I am the mother of a 5 year old daughter with CMT2. She was just

diagnosed. So I know as a mother what that was like for you when she was

diagnosed as a little one. Is she the only one in your family? My

daughter(Payton) is the only one that we know of. What type does she have? I

am really interested in how she is doing because of course, I often think about

how my daughter will be doing a various ages. (although I know it varies). Nice

to talk with you,

(IL)

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  • 9 months later...
Guest guest

Welcome Sharon,

About 11 years ago, I lived in town/Fountain Hill, used to work for PIC in

Bethlehem. I now live in Warrington which is outside of Doylestown in beautiful

Bucks County.

I hope you will enjoy the group and benefit from it as much as I have.

Sharon

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