Note of Introduction

[Guest guest]

Hello

My name is Tammy I am 48 yrs old and have CMT 1A

We have 4 daughters ages 26, 15, 7 and 4 (adopted from China)

It wasn't until our 15 yr old was diagnosed ,that I was diagnosed and

our 7 yr old was diagosed that I was able to to put a name to it and

then was able to search for information.

I thought I was just the genetic garbage dump for our family. Not

realizing I had CMT. I never dreamed that I was passing on something

to my children.

My CMT caused Scoliosis and at 10 years old I had progressed to a 60

degree curve. I had a Herrington rod implanted and had a body cast

for 6 months. I also had brain surgery for a golf ball sized tumor

( Meningioma) not CMT related. (at least I don't think so)

All of this was a piece of cake compared to finding out that my

daughters had CMT. I was heartbroken.

WE live very positive lives and treat each day as a gift.

I have decided that I will not lose the preciousness of today by

worrying about what tomorrow might bring.

My 83 yr old father lives with us and refuses to realize he has the

same condition.

We live in Northeast Ohio near Cleveland.

I am looking for facilities and physicians who specialize in the

treatment and care of this disease.

My children are at some pivotal points in their growth and

developement and would benefit from knowledgeable advice.

We currently have a neurologist, orthopedist and a physical therapist

but each are rather clueless in familiarity with this disease and the

best ways to treat situations as they arise

..

I can't begin to tell you how comforting it is to hear others share

about CMT.

I am thankful

I look forward to reading all of the information and wisdom within

this group and to get to know all of you

Tammy