New Introduction

[Guest guest]

Hello.....My name is . I was diagnosed with CMT when I was 15,

but from the time I was little, actually from the time I could walk,

my parents knew something was wrong wtih me by the way I walked and my

drop gait as well as a bunch of other symptoms. They always thought it

was my back that was the problem until AI DuPont Children's Hospital

diagnosed me with CMT at the age of 15. I had surgery on both legs

that at that time was considered experimental and from waht I read

now, it is more common surgery. I am now 33, married with 4 kids and

it is getting a lot worse. I have tried and looked for a long time to

find a doctor who could help me with the CMT but all I got was

orthopeadic doctors who knew nothing and ultimately told me that they

didn't knwo what to do. Now, I am finding help online and finding

where to go for help in my area a bit....it is slow in coming.

However, the symptoms are getting worse, walkign is impossible at

times, and I am just getting scared and worried. I was told at 16 that

I have a severe case and could be in a wheelchair by the time I was

30...I am still walking, but still worried. So, that is the long and

short of it and I look forward to learning and meeting other people in

here who can relate!!!