Re: would you?

[Guest guest]

Yes, , in your situation with a family history, I would have

the DNA test, and I would also hope my sister could be tested, but

first, have either of you, or other relatives had the EMG/NCV

testing and what were the results? Your neurologist is best to

consult here. Assuming my EMG/NCV results and those of my sister

pointed to CMT, then I would have the genetic test.

I can't remember your age, nor do I know you sister's age, but

sometimes women of childbearing age do wish to be tested genetically

for purposes of future family. If you know which type you have, say

like CMT 1A (the most common type), there is a pre-natal test, and

there is also PGD - a type of invitro whereby the CMT gene is

removed, and the child born has no CMT.

As I understand it, the Genetic Discrimination Bill passed in the

Senate, but still has to pass in the House. And like Elinor

mentioned earlier, it is not law yet, and then my question on the

whole issue is how to inforce it? So many " laws " remain un-inforced.

I have not had the DNA test, this is because I was diagnosed so long

ago and have no need to have the test now. In my childbearing years

I pretty much figured since I had it, I'd pass it on to my children.

No way was I going to let that happen, not with what I went through,

and having read research that 2nd generation CMT can show worse

symptoms. A 50-50 chance of passing it on to offspring didn't seem

like good " odds " to me.

~ Gretchen

[Guest guest]

I understand everyone has individual opinions, so I'm not looking to fuss here,

but I don't particularly have a problem with my disability, even though it is a

severe form of CMT.

Consequently, I didn't think twice about having children. I now have two kids,

who both have it, and they are both pleasant, intelligent and thoughful humans.

In school, they carry A averages, are in all AP classes, and both want to be

attorneys. What more could anyone

want? To be a silly sports player? Not. I also have friends who are profoundly

disabled due to CP or accidents, who still have a good mind, and I thank God

they are alive.

One reason I am always suspicious of pre-natal testing, is oftentimes, it is

only targeted at eliminating a person with a disability, rather than helping

parents and families prepare. I'm all for eliminating CMT in the DNA, and while

they're in there, they can add a pair of wings. lol

[Guest guest]

,

Absolutely, and I did. Or rather my wife and I had our twins tested

pre-natally. I have CMT X and we wanted to be aware from the

beginning if the girls had CMT so we could get them the very best

medical care and all.

As it turns out, the twins tested positive for CMT X. They also have

NEVER shown symptoms - and they are in their late 20's now. They are

in fact " carriers " of the gene. The girls are very educated on CMT

now and make every attempt to educate their respective husbands on

CMT related issues.

My brother was not tested, refused to be, - dug his head in the

sand - thought for sure he was " spared " . Growing up he played all

sports, surfed, etc. Long story short, he's in his late mid-40's now

and his CMT symptoms are very much a reality; falls, problems with

balance, feet deformities, calf wasting and tremors. He still

refuses to believe it's due to CMT. He's also a psychological mess

at this point.

Gretchen, just another note of " thanks " for and all you do.

You're 1 in a million!