authenticity of statistics

[Guest guest]

Sandeep,

I have seen CMT referred to as affecting 1 out of 2,000 and also 1 out of 2500.

And this is for the general population. I have looked at many CMT sites and much

information and have found no authentic source for these numbers. These numbers

above refer to those people DIAGNOSED with CMT too. Many people are

mis-diagnosed, also those people in 3rd world countries without medical care are

not included.

I had a mathematician work on the statistics based on the last World Census, I

believe that was in year 2000. We split that into adults and children and that

is where we came up with the statistics on our main webpage - a total of 6

million in the world. CMT Today Magazine had comprised their own statistics by

geographic area - as you will see, this leaves out certain geographies:

12,522 Australians and New Zealanders

12,800 Canadians

115,453 Americans

315,636 Europeans

320,616 Africans

1,447,861 Asians

2,504,054 Worldwide

So as you can see, many are left out. Also many individuals are undiagnosed and

many are misdiagnosed, therefore actual statistical numbers are thought to be

much larger.

The European population statistic refers to the entire continent of Europe and

includes all members of the European Union (so that too leaves people out)

Also, the statistics for Americans does not include the entire continent of

South America. Russia is left out, so is Central America, as are other nations

and Pacific Islanders. If you'd like to calculate the statistics for every

country using the most recent world census, I would appreciate your help.

I agree, we need better " numbers " from which to work.In reality, what would be

best would be to take each country in the world, use the most recent census, and

calculate - but even that is not going to show " actual " numbers. Many people

with CMT are in denial and want to hide it from themselves and families, or

dismiss it off as " arthritis " or something else.

Gretchen/Moderator

Founder-

[Guest guest]

Hi Gretchen,

The Idea behind getting the numbers is to build up a good 'business

case'. We need to benchmark the funding CMT research is getting

against funding Alzhiemer or Spinal cord injuries is getting.

I just ran a search on Alzheiemer on and it returned 5 Million

results. I ran a search on Charcot marie tooth and it returned 55000

results. If this is the right indication than there is extremily low

awareness. From the figures available (Subject to there reliability)

the CMT funding should be 3 Percent of the funding Alzhiemer is

getting. (115000 CMTers Vs 4 Mill Alzheimer). I have a strong

feeling it is substantially less than that.

A lot needs to be done in this direction.

Thank You,

Sandeep

>

> Sandeep,

>

> I have seen CMT referred to as affecting 1 out of 2,000 and also 1

out of 2500. And this is for the general population. I have looked

at many CMT sites and much information and have found no authentic

source for these numbers. These numbers above refer to those people

DIAGNOSED with CMT too. Many people are mis-diagnosed, also those

people in 3rd world countries without medical care are not included.

>

> I had a mathematician work on the statistics based on the last

World Census, I believe that was in year 2000. We split that into

adults and children and that is where we came up with the statistics

on our main webpage - a total of 6 million in the world. CMT

Today Magazine had comprised their own statistics by geographic

area - as you will see, this leaves out certain geographies:

>

> 12,522 Australians and New Zealanders

>

> 12,800 Canadians

>

> 115,453 Americans

>

> 315,636 Europeans

>

> 320,616 Africans

>

> 1,447,861 Asians

>

> 2,504,054 Worldwide

>

> So as you can see, many are left out. Also many individuals are

undiagnosed and many are misdiagnosed, therefore actual statistical

numbers are thought to be much larger.

>

> The European population statistic refers to the entire continent

of Europe and includes all members of the European Union (so that

too leaves people out)

>

> Also, the statistics for Americans does not include the entire

continent of South America. Russia is left out, so is Central

America, as are other nations

> and Pacific Islanders. If you'd like to calculate the statistics

for every country using the most recent world census, I would

appreciate your help.

>

> I agree, we need better " numbers " from which to work.In reality,

what would be best would be to take each country in the world, use

the most recent census, and calculate - but even that is not going

to show " actual " numbers. Many people with CMT are in denial and

want to hide it from themselves and families, or dismiss it off

as " arthritis " or something else.

>

> Gretchen/Moderator

> Founder-