My Introduction

[Guest guest]

G'day

My name is and as you've already guessed, I'm

from Australia. I am 33 years of age and was diagnosed

with Dejerine Sottas disease (severe CMT) when I was

about 3. I have achieved many things and have done some

crazy things that would curl hairs. eg Bungy Jumping.

One of my achievements was winning a Australian Title in motor sport (Honda

Odyssey

ATV) in 1987. I have also had a dabble with drag racing

which I enjoy, but my reaction times are somewhat

inconsistant!!! It is still a fantastic buzz win or

lose.

I am happily married with 1 lovely 6 year old daughter. Yes, she also has

CMT. I have had genetics testing done and completed with

a mutation in the PMP22 gene confirmed. I have a

management job and I'm involved in a online business

partnership. My CMT does not prevent me from attempting

to succeed in Business.

As I have lived with CMT all my life, my friends and

collegues have learned to accept me for who I am.

(I still fall over even in a collared shirt and

tie). It is amazing to find the amount of info on the

net, and also the advancements in the last few years,

well, ok 10 years. I am wanting to share info and

talk with others who have Dejerine Sottas form of CMT.

I walk with crutches most times, but around the house I

do not. I have had AFOs for a period of about 6 - 8 years,

which gave me stability and support. They were the best

thing that could of happened to me. Until.......... I

found that they were very painful due to me foot deformity.

My feet had dropped and twisted, which caused preasure points

on my feet. I can now get around the house in bare feet,

yas walking on my soles. Thanks to 3 operations to my feet

I have a new lease in life because I have not felt as good

since school. The fusing of my ankles was the best thing

that I have done to assist day to day living with CMT.

I am happy to discuss my situation with anyone, and would really appreciate

anyone with Dejerine Sottas to contact me to share stories.

CMT sure does prevent me from catching those damn Kangaroos

though!!!!

Take care

Australia

[Guest guest]

Welcome and thanks for coming out of lurker mode.

We try very hard to maintain a cordial and polite atmosphere here so that no

one should fear looking ridiculous. If anyone has something to contribute or

a question not answered in BT120YD or our files/links, please do ask it.

You may have something valuable to contribute to the group and we all

benefit from that.

on 6/22/2004 12:27 PM, rebecca hellem at starshine223@... wrote:

Please forgive me if I ask/say

> anything that seems ridiculous. I am so new to this and my desire to do CRON

> correctly for the rest of my life is strong.

>

> I hope to get to know everyone very well,

>

> Hellem

>