Write an email raise awareness update-NCC

[Guest guest]

A few months ago I asked folks to write to the author of the

emedicine article about sm. I was very upset about their online

article about sm which stated 20% of those with sm died at an average

age of 47. I saw this figure the day I was diagnosed and was

devastated. When I researched this figure further I found Dr.

Heiss' response to this statement on the CCI website and realized

that this figure is based on a study done in 1967. I asked folks to

write emails to insist they update their article to more accurately

reflect the current status and outcomes of those living with sm and I

just noticed today that they have!!!

http://www.emedicine.com/neuro/topic359.htm

the article now acknowledges that those numbers are based on old data

and that current mortality rates are likely much lower due to better

treatments.

So I just want to thank all of you that took the time to write.

There is truly strength in numbers and I think we all need to take an

active part in ensuring that there is correct info out there about

our disorders. This is a great start and if one person is spared the

same fright that I had reading that figure then I am happy.

Caroline