Re: Type 2E child

[Guest guest]

, Hi I don't mean to interupt , but I was wondering what type of Cmt you

have. We have a 5 year old who was just dx with type 2E. I always wonder what

life will be like for her. She does not like her braces either. Any surguries?

[Guest guest]

Hey

I had the test done in 1986 to see what type I had but that information was lost

and my mother can not remember. I am being tested aging next year and planing

to try and start a family. The first sign I showed was walking on my tippee

toes and very large calf muscles. My legs then started to go down hill in a

fast rate and I found walking and going up and down stairs almost impossible.

Then in 1990 my hands began to show sign of muscles wastage.

I was told by my doctor I was the only person in Australia with CMT. What a

load of poo. There were about 10 living in my town at the time. Please

encourage your little girl to use her bracers she will regret it like I do now.

I know how cruel kids can be. I have tried to get back into them but my knees

keep giving away on me and I fall so hard to the ground and break bones.

I hope I have help you a little.

Take care

[Guest guest]

Sorry I meant to let you know that I have seen so many doctors and the

operations are not worth all the ongoing pain for the rest of your life. It was

suggested I have bones frozen in my feet and my tendons replaced and lengthened

in my hands and feet. I have spoken to three people at a meeting who had these

procedures and they regret it as it has left them in severe pain for years

after. We all have different ideas but I will never have and operations. I

have already had ten operation that are not even related to CMT.

Thanks