Re: Wake Forest University?

[Guest guest]

Larry,

I have CMT 1A. I only post once in a while because I have to go to the library

to use the internet as we have very little money for extras like internet.  I

noticed you mentioned Wake Forest University. I moved to NC just about two years

ago with my son and know that there is a Wake Forest University here. I am

wondering...do you live in NC? I have only met one other person (in person) here

with CMT.

Dawn

[Guest guest]

Dawn,

I live in ville, NC and I have 2 grandchildren with CMT. My oldest

grandchild is showing the worst symptoms, he has aready had to have CMT1A. We

are here.

Hilda B.

[Guest guest]

Dawn:

I used to live in Virginia -- Roanoke. I was referred to Dr. Donofrio at

Wake Forest when my local neurologist wasn't able to differentiate further than

a peripheral neuropathy. I am a bit unkind as my presentation wasn't classical.

I had left leg and right arm deficits which is very uncommon.

Dr. Dodnfrio has since moved to Vanderbilt so he is probably lost to you without

a specific referral.

My wife and I now live in Italy, being driven out if the US due to the rotten

healthcare system. From what I seen about the healthcare quagmire in congress, I

don't see anything changing for the better. The big elephant in the room that is

being ignored is the physicians' fear of being paid in the same universe as

everyone else. Imagine seeing a doctor for more than twelve minutes -- twelve

minutes being the optimal time per patient to maximize earnings. Over here,

patients are scheduled for a minimal of thirty minutes, but if it take two

hours, it takes two hours.

Unfortunately emigrating to Italy will only work if, like me, you married an

Italian citizen 27 years before the first symptoms showed. I am here as the

spouse if a repatriating Italian citizen.

Your best source if treatment is probably through the MDA, though CMT is really

an adoptive stepchild to the organization.

I wish I could be more upbeat about US healthcare, but I find it morally

abhorrent to profit from illness. The US system is designed for profit, and will

stay that way in the near future.

Regards.

--Larry

[Guest guest]

Larry, Thank you for getting back to me.

I know the health care system here is like that and I actually avoid it alot. I

try my best to take care of myself and almost never get a cold or sick as a

result of always keeping clean and my son clean. I just hate going to a Dr.

unless absolutely necessary. As regards to the CMT, I can live with the minor

pain and have become used to handling any motor loss on my own.

It's kind of comical sometimes as my hands are now affected and dropped my son's

sandwich into the full tub yesterday. We made a joke out of it because what else

can you do? I really like hearing what other people with CMT think about the

healthcare system, especially since I have family that work in that system and

think its wonderful and I can't say anything to them about it.

Dawn

[Guest guest]

Thanks Hilda. I'm guessing your grandchildren are a bit younger than me. I'm 40.

But, I guess you never know.

Dawn

>

> Dawn,

>

> I live in ville, NC and I have 2 grandchildren with CMT. My oldest

grandchild is showing the worst symptoms, he has aready had to have CMT1A. We

are here.

>

> Hilda B.

>