genetics?

[Guest guest]

Thank you, Gretchen. Although I was diagnosed many years ago and have been

using forearm crutches since I was 14 yrs. old, this sort of group thing is

new to me. Thank you for your patience.

Now this may be a subject which has been discussed and considered to the

point of exhaustion, but still I will ask for any info anyone has. It is

this: I need to know about the latest genetic findings, research, testing

that is being done. I understand that life with this disease means a lot of

waiting and acceptance but I would like to take an ACTIVE role in managing

and understanding the conditions which come with CMT. I had some genetic

testing done in '95, before the birth of my son, but they were able to find

nothing. From what I hear knowledge and capabilities in this area (genetic

testing) has advanced since the mid-nineties. Of course, these tests are

quite expensive, so if anyone knows of assistance available (in paying for

such testing), please, let me know. I guess I want to know what exactly this

thing is I've got (the CMT diagnoses seems so wide, with many different

faces), then I can perhaps figure the best way to handle the future of my

own disease and the possibility of it rearing its head in one of my kids'

lives.

Any feedback would be great. Thanks.

Peace,

Marc