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Re: CMT at Birth

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Rob, simply because doctors haven't mentioned it, doesn't preclude you

from having it. There is a great deal of ignorance about CMT in the

medical community. When I was a child (I'm 34) I was told by the head of

orthopedics at Children's Hospital of Philadelphia that I would be able

to squat if I just stretched my calves a little every day.

I don't know about French ancestry. That's sounds a bit absurd. I do

believe that the people who discovered the syndrome were French. From

the side that has CMT I am German and ish.

Everyone who has CMT has it at birth. I did once have a school nurse ask

me how long I had it.

Now if all you have are tight tendons then you may have either diplegic

cerebral palsy or idiopathic tight heel cords. It doesn't have to be

CMT.

In answer to your question, I had a lot of problems before I was four.

There are different types of CMT.

Lorna

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Hi Lorna,

The surgeon that asked about the French ancestry was a quack, in my

opinion. It seems to me that most diagnosis of CMT are initially

made as a result of doctors looking at the typical signs (high

arches, curled toes, etc.). But the " typical " signs don't seem to

appear in people at a very young age (0-4). So, I think that there

is even more ignorance when dealing with young CMT patients.

Rob

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Although I wasn't diagnosed until I was 32, I had problems with my

feet from birth. If I remember correctly, my mother said my feet

turned in as a baby and that I had to wear some sort of brace to

straighten them out. After I started walking (around 15 months), my

parents noticed that I always walked on my toes and had flat feet. I

was fitted for in-shoe plates which I wore until I was 7-8 years old.

No one suspected anything beyond " bad feet " and it wasn't until I had

my own daughter (noticing similarities between my problems as a child

and hers) that I took the initiative to find out what was causing the

problems.

heather

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hey rob,

i am 18 and was diagnosed with cmt a year ago

but i feel i always had it.when i was born i had foot

deformities as my left leg was longer than my right so

i was taken to hospital and also when i first started

to walk i walked on my tip toes for some reason and i

was taken to hospital to straighten out my leg and

feet. since then ive had no operation on my feet or legs

but i think that the reason i have cmt is something to

do with this when i was younger.

tracy

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