UNawareness

[Guest guest]

Hi Group:

Aren't you all just blown away by authors who think CMT is a rare

form of MS, or dr's who appear to be using Todd McCullah as a guinea

pig?! If I were his mom I would be so worried...and not just because

he has this " rare " disease. But mostly from the lack of knowledge by

his medical team. Obviously his dr.'s have not bothered to do much

research on CMT. Why would you give this young man a false hope of

a " cure " ? I'm certainly not saying that he should give up hope, but

you have to be able to deal with the reality here in order to help

yourself and move forward. All of this makes me so angry and

frustrated. Everywhere I go, it seems I have to enlighten the

medical staff about my disease and then I get the feeling that they

either don't put much worth in my words or they just don't really

care. I'm sorry, I don't mean to bring a negative attitude here, but

I am really frustrated with my own situation right now, and this kind

of stuff just reaffirms all my fears of the medical world we live in.

[Guest guest]

No kidding , I am really suprised by the stuff I read and hear

about. ~ Gretchen

juliexbi2002 wrote:

> Aren't you all just blown away by authors who think CMT is a rare

> form of MS, or dr's who appear to be using Todd McCullah as a guinea

> pig?! If I were his mom I would be so worried...and not just because

> he has this " rare " disease. But mostly from the lack of knowledge by

> his medical team. Obviously his dr.'s have not bothered to do much

> research on CMT. Why would you give this young man a false hope of

> a " cure " ? I'm certainly not saying that he should give up hope, but

> you have to be able to deal with the reality here in order to help

> yourself and move forward.