Re: Percentage of CMT people having high arche and hammer

[Guest guest]

These statistics are unknown. We barely have a figure for the number of people

with CMT - and that comes from a 1974 study. That is 1 out of 2500 persons.

Not satisfied with that 30+ year old report, with the help of Dr. Vinci, we

calculated that 6 million people in the world are affected by CMT. (used

information from the World Census 2000) and I think that broke down to 90,000

people in the USA. But staticians and mathmeticians we are not. And that didn't

necessarily include 3rd or 4th world countries where CMT is unknown,

undiagnosed, misdiagnosed or untreated. And then there are unknown statistics

among ethnic groups, or between women and men, etc. Info for all that is

lacking.

I wish once and for all that the CMT world would get some truly correct

statistics on occurrence. It would help with media, awareness, fundraising if we

had real numbers. Maybe someone will jump on this with the 2010 census.

The general population clock (still based on the 2000 census) as I write is

U.S. 308,221,037

World 6,792,119,719

18:55 UTC (EST+5) Dec 24, 2009

So if you're interested, do the

math.http://www.census.gov/main/www/popclock.html

Gretchen

[Guest guest]

Thanks so much for your answer. Could you please help answer my second question

in my previous email, which I will post here again. " Also, I know that many

people here having family member with CMT while

at the teenage years, so could you please tell me what are the first

symptoms that lead you to suspect that they have CMT besides funny walk

and/or hammer toes? "

Happy holidays.

Minh Vo

________________________________

From: gfijig <gfijig@...>

Sent: Fri, December 25, 2009 1:40:31 AM

Subject: Re: Percentage of CMT people having high arche and hammer

These statistics are unknown. We barely have a figure for the number of people

with CMT - and that comes from a 1974 study. That is 1 out of 2500 persons.

Not satisfied with that 30+ year old report, with the help of Dr. Vinci, we

calculated that 6 million people in the world are affected by CMT. (used

information from the World Census 2000) and I think that broke down to 90,000

people in the USA. But staticians and mathmeticians we are not. And that didn't

necessarily include 3rd or 4th world countries where CMT is unknown,

undiagnosed, misdiagnosed or untreated. And then there are unknown statistics

among ethnic groups, or between women and men, etc. Info for all that is

lacking.

I wish once and for all that the CMT world would get some truly correct

statistics on occurrence. It would help with media, awareness, fundraising if we

had real numbers. Maybe someone will jump on this with the 2010 census.

The general population clock (still based on the 2000 census) as I write is

U.S. 308,221,037

World 6,792,119,719

18:55 UTC (EST+5) Dec 24, 2009

So if you're interested, do the math.http:// www.census. gov/main/ www/popclock.

html

Gretchen

[Guest guest]

I noticed my sons high arches at age 9 or 10 and that is what prompted us to

have testing done.

Lori

[Guest guest]

Hello Minh Vo,

I don't know if there are any statistics but I can tell you of my experience

just within my own family. My paternal grandmother had extremely high arches and

hammertoes. My father had normal feet until he reached adolescence and then by

the time he was a teen they were very high arched and with severe hammertoes. He

has refused corrective surgery, has shoes specially made and wears home made

orthotics (which I keep telling him he should patent). He gets around just fine

at the age of 70, though he won't let anyone see his feet anymore

(embarrassment).

My feet have always appeared very normal. They run slightly narrow but with no

hammer toes and a normal arch. I have significant numbness, though, especially

on the left.

My sister had normal appearing but narrow feet until she was in college when she

started noticing that her toes were curling up and arches were getting higher.

That was about the time she experienced profound " drop-foot " on the left, which

returned to normal after 6 months. She has had toe straightening surgery and is

actually missing segments of bone in each of her toes in order for them to look

straight. Her arches are still high.

My other sister has no foot abnormalities.

My daughter is only 16 and is already developing curled toes and high arches.

She complains that her feet look " old " . They really do. She has no handicap,

though, and is very active.

My understanding is that as the small muscles in the feet weaken, due to lack of

input from nerves, they do not hold the bones in place very well and that is

what causes the characteristic CMT look. It obviously has varying degrees of

being a problem, even within the same family, there are no generalities that

apply. I hope that is a little helpful.

Other symptoms I and many have felt as young people: numbness (it can come and

go); parasthesias, which are abnormal feelings of things that aren't really

there, like bugs crawling on the skin when there aren't any there; " shooting

pains " which are random, sudden, traveling pains like shocks; and

fasciculations, which are muscle twitches. All of these can happen anywhere in

the body.

Holli

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[Guest guest]

There seems to be such a variation from person to person. It was actually

noticed earlier in my sister because she walked on her toes from the age of 3

until she was at least 7. People thought it was so cute, like she was a little

ballerina or something. (Little did they know!) But her feet look quite normal,

she actually has flat feet. But as she ages her ankles are getting weaker and

weaker.

While on the other hand, mine didn't show until my teens when I became quite

unbalanced and what some would have considered clumsy. I remember ppl asking me

if I had hurt my ankle and someone else saying that I bow-legged. (My ankles

were already weakening) Now I understand why, but at the time I didn't. And,

unlike my sister, I was *blessed* with the ugly classic high arch and hammer

toes, as was my father and his father.

Really, because of the uniqueness of the progression in each person, unless the

symptoms are pronounced, (like my sisters were) I guess the only way to be sure

is to be tested.

Angie

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