Advances in Our Lifetime

[Guest guest]

Andy,

While I agree that a positive quality of life with CMT requires us

to be emotionally very strong, I hope your realize that just since

the new Millenium (2000) there have been some major advances in

arresting CMT, and these are especially hopeful. Prior to this, in

theh 1990s we saw the explosion of genetic tests, pre-natal testing

and the beginnings of PGD for CMT-free children.

I think I am alot older than you I believe, although we both grew up

with CMT. Although I am not a dinosaur, when I was diagnosed there

was only a one paragraph definition of CMT in medical books, and all

tests were given to rule out everything else. I shall also never

forget the horrendous Physiostigmine trial I was in. There were no

support groups, and no Internet to get info an meet others.

But the " Advances " I mean are the stellar research that was

published on NT-3 and announced in Oct. of 2003, followed quickly by

the first reports of Ascorbic Acid, then that was followed shortly

thereafter with the first news about Onapristone. There is much more

research going on all over, too, when I got interested in this more

and more, I started believing more and more arrestment for CMT WILL

BE in my lifetime. (You can read about NT-3, Ascorbic Acid (Vitamin C), and

Onapristone in our Files Section or go back in the Archives to about mid-October

2003 and read forward)

Hey, I'm in to win!

~ Gretchen

[Guest guest]

Gretchen,

Thank you for your response and I wrote the supplements down and will do some

research on it. I am grateful for this forum and it seems you have expertise in

this area. I am only 31 but have suffered

from the disease since birth. I am sure much of my experience was just really

bad luck that's why I am going back and see a CMT doctor after 15 years.

I am sorry if I made my prior posts negative but I feel that's why we have this

forum to ask for support. I was a mental health counselor for many years and

have ran many support groups but none like this.

I am trying to be more positive and hopeful but I am also a skeptical and a

realistic person at the same time. Whatever the doctors say I will take in and

not be devistated.

I thank you again for your moral boost. We all can use that from time to time.

Andy