Re: 90 Thousand USA CMT people

[Guest guest]

In a message dated 10/5/2006 10:36:15 A.M. Pacific Daylight Time,

fijiwigged@... writes:

That is 90,909 - get that? Ninety thousand, nine hundred and nine

people have CMT in the USA!

My Mom was told CMT was so rare. Not so rare if you ask me.

jenny

[Guest guest]

No kidding , I heard that 'rare' word too. But in 1962, even

though CMT was in fact 'known', it was unfortunately lumped into a

category of MD. Remember too, our USA population at that time was

alot less - but now more people, more generations procreating, equals

more CMT.

The mere fact that I was 'supposedly' 1 of only 10 people diagnosed

with CMT in the USA is BS. I mean, there you were, and so were the

other 8 + hundreds/thousands too, lol

With 90,909 people in the US with CMT, don't you think we'd get more

research and treatment in the works? That is a large number of people

who would benefit. And as our population grows and generations

procreate, there will be more people with CMT.

I also meant to say that that 90,909 figure does NOT include

children, so if I can work out a child number, the total number will

obviously increase.

~ Gretchen

[Guest guest]

Hello Gretchen,

Several years ago, I went to a lady doctor in Portland, ME who was

listed on the CMTA Board of Advisors. She has since moved to the

White Plains, NY area and I can not get her name from my memory. She

told me that she had been studying the French related population in

the Northeast US and found an incidence rate of 1 per 800. She said

that this was traced back to a couple who emigrated from France in

the 1700's. Those comments could raise a lot of questions, but I

thought I would pass it on anyway.

EdM from NH

>

> Dear ers,

>

> Later this week, the U.S. Census Data Bank will release their new

> figure stating that 330 million people now live in the USA. I have

> been wondering for so long how many people in the US have CMT.

>

> Dr. Greg , CMT expert, provided me with an academic research

> paper from 1991 that gave a figure whereas 1 out of 3,300 people are

> affected with CMT. This is the same figure Mayo clinic uses.

>

> I contacted two other organizations and both reported it is 1 in

2500

> who are affected. One organization gave me no research data to back

> that up. The response was simply " this is the number we use given by

> our Medical Advisors " . The second organization replied with that

same

> number, but didn't even say where they derive that number - they

just

> sent the number.

>

> With the trust that I have for Dr. and the CMT experts and

> academics at Mayo, I decided to use the 1991 academic report on CMT

> populations and then with this new USA Census figure, see how many

> people have CMT in the USA. (Obviously there is no way to

> actually 'count heads' - many with CMT do not know they have it.

> Also, as we know, people are often misdiagnosed with a 'form of MD

or

> MS', ad infinitium)

>

> OK, now we have a good figure for the CMT population in the USA.

> Ready for this?

>

> That is 90,909 - get that? Ninety thousand, nine hundred and nine

> people have CMT in the USA!

>

> My next plan is to break down the new Census information by State,

> Counties and major cities. Remember, you heard it first at .

>

> I have been asked to write an in-depth article about CMT and will be

> including this information. Soon as I find my link to the 1991

> report, I'll post that for your information. If you use any of the

above information in your support groups, individual newspaper

articles, posts on forums, info for your doctors, wherever, please

respect my project and credit . Thank you.

>

> ~ Gretchen

>

[Guest guest]

Hi Ed in NH,

Thanks for your input. French ancestry population in general in the

Northern U.S. has shown a *greater incidence* of CMT due to

interbreeding and then also the French Acadian CMT in the South, due

to mixed marriages and interbreeding. However, for my article, I need

to back all stats up with footnotes and have consulted with advisors

who encourage me to use the stats of 1 in 3,300 Greg and Mayo

use.

A few years back Wheeler and CMT World Magazine did a 'world

report' statistics on CMT, which was enlightening, it included

Oceania, Australia, Asia, etc., all major continents and areas. At

that time I discovered there was more Autosomal Recessive CMT in

Africa as well as the Middle East, also due to mixed marriages and

inbreeding. At this time Dr. Vinci in Rome presented me with an

altogether different number for CMT affected persons in Italy.

Anyway, at that time it was estimated that about 6 million people

globally are affected.

But then, think about 3rd world countries - getting a CMT diagnosis

is not a priority like finding food to eat or fresh water to drink.

Since so much CMT research comes out of parts of Asia, I *suppose*

they have higher figures, but seriously, what are we going to do,

stand all people with known CMT up and count them? LOL Even if we do

that, LOL, what about all those who are carriers, but asymptomatic?

Questions, questions, and more questions. Why don't ya make me work

hard? LOL

~ Gretchen

[Guest guest]

Ed

That was interesting to hear. Around 10 years ago when my CMT started getting

worse I saw a consultant in the Southern General which is home to Scotland's

main neurology department . She told me that the incidents of CMT in Northern

Ireland and the west coast of Scotland were higher than the rest of the UK.

Since at its narrowest point the two countries are only 12 miles apart and also

its history I can understand that.

I'm northern Irish by birth and have been brought up in both countries though,

and have been dragged round hospitals on and off throughout my life = with my

mother at one point being derided as hysterical (the 60's, didn't you love 'em!)

so it makes you wonder how in the past the condition was ever dealt with! The

sad thing is even now all the knowledge we have is still so patchy.

I'm off before I get really depressed!

Fiona from Glasgow, Scotland

[Guest guest]

Hello Gretchen,

You ought to see what the FAA and the Congress are doing for the

estimated 10,000 blind people with guide dogs! The airlines and the

other public transportation modes will have to jump through the hoops

for them as decreed by the regulations.

EdM from NH

>

> No kidding , I heard that 'rare' word too. But in 1962, even

> though CMT was in fact 'known', it was unfortunately lumped into a

> category of MD. Remember too, our USA population at that time was

> alot less - but now more people, more generations procreating,

equals

> more CMT.

>

> The mere fact that I was 'supposedly' 1 of only 10 people diagnosed

> with CMT in the USA is BS. I mean, there you were, and so were the

> other 8 + hundreds/thousands too, lol

>

> With 90,909 people in the US with CMT, don't you think we'd get

more

> research and treatment in the works? That is a large number of

people

> who would benefit. And as our population grows and generations

> procreate, there will be more people with CMT.

>

> I also meant to say that that 90,909 figure does NOT include

> children, so if I can work out a child number, the total number

will

> obviously increase.

>

> ~ Gretchen

>