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MY INTRODUCTION

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Hi,

Thank you for allowing me to join your CMT group. I, too, have CMT and have

been diagnosed when I was 27 years old. Even though I could tell I was

" different " than others when I was a tomboy living in Brooklyn, NY wanting so

desperately to play sports and wondering why I was having a hard time with

balance

and other signs.

I moved to a small town in Oregon where finally a doctor was able to tell me

the truth and told me that I had CMT and then we tested my daughter (age 7 at

the time) and she has inherited from me..bummer!

No one around me understands the difficulty I have walking. I already had 20

foot surgeries and a total left hip replacement and as I write this my right

hip is on it's way out.

I want a part-time job once they can fix this leg and the agonizing pain that

has taken place. I took a fall and tore the Labral in my right hip (or

groin) and the pain is unbearable. Even Methadone does not help but I am still

trying my hardest to find relief. The surgeons here (I now live in Southern

Florida) DO NOT want to do any surgery on it for fear that, " they can/will do

more

harm than good. " So, what do I do?

I need friends like me so I can chat and not feel so isolated and alone.

Sometimes I do not write back quickly because I get into a " depression funk " and

relay writing and do nothing.

Glad to join, would love to meet people and chat and become friends.

Sincerely,

Alyce

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