Re: Updated Rates Of Common U.S. Neurological Disorders

[Guest guest]

I wonder why CMT is not listed as it is phrased to be " the most common

hereditary peripheral neuropathy " .

jackie

[Guest guest]

Hi Jackie,

While we all know the commonality of CMT, it still does not affect a

known percentage of people like the other syndromes mentioned. Some

sites use a 1 in every 2,500 are affected, while my most recent

research revealed about 90,000 in the US are affected with CMT.

(that was based on a 1991 research study and also the latest

population numbers from the Census)

Perhaps there are more people with CMT who are misdiagnosed, or

those people who believe they have something else, or those people

who do not seek medical care or cannot. For years we have needed a

CURRENT CMT population statistic. When Wheeler was publishing

her wonderful magazine " CMT Today " one of her staff did compile a

world listing that was very thorough.

In reality, there is no way to actually " count " CMT people. In

addition, there may be a higher incidence of CMT in 3rd world

countries, but persons there are concerned with getting enough food

and water and staying alive or out of gunshot range, so it would be

very hard to ascertain the population numbers.

CMT is the most common inherited neuromuscular disorder, globally

affecting over 6 million people. (the 6 million came from the year

2000 Census) The most common inherited peripheral neuropathy is more

likely to be Diabetes.

~ Gretchen

[Guest guest]

Thanks for the clarification; it is intersting how little the medical community

knows about CMT although they like to think they do. When I told my PT the other

day what I had, she said, " OH, I know how to spell that because I had to spell

it in school " I guess it is our responsiblity to not only seek out the experts

but also to start educating the medical professionals that only know what CMT

stands for and that is where this forum is wonderful to give us the proper

verbiage to use.

Jackie