A number of things

[Guest guest]

Hi, Barbara here -- which is to say in Bethesda, land, about two blocks from

Washington, DC. Thanks for your supportive remarks Ruth. I've tried so hard to

do the research necessary and sort through the different options for my

daughter.

Inasmuch as neither I nor anyone else in my family has CMT, I depend on this

Board for insight and information. I hope the decision to move forward with

surgery

is the right one. Her feet seem to be worsening rapidly.

I also want to extend my congratulations on

your decision to become involved in the MDA and your daughter's nomination as a

local MDA Goodwill Ambassador. My little girl gave a talk to a firefighter's

association to raise money for the MDA. She dressed up in a frilly,

pink-flowered

dress and wanted to wear pink ribbons in her hair. She was eager and shy and

only

managed to spit out a single sentence. Still, it was her first shot at public

speaking, and the firefighters raised $30,000 that weekend. Not bad for an

eight-

year old. And, like you, I am thinking of doing some writing to advance public

awareness

of CMT. By that I mean an article for a local magazine. But while I have

everyone's

attention, let me add that I am also writing a novel and I have been thinking

of creating a character who has CMT as one of her many characteristics (she will

alos

be a scientist). Since I do not have CMT, I may ask questions from time to time

that will enable me to create an authentic character. I will always let you

know when I

am doing this so that each of you can decide whether you wish to answer, or

steer

clear of, my questions.

On the subject of digestive issues/problems. I wouldn't necessarily say my

daughter has

a problem, but she has always had loose stools and going to the bathroom has

always

been more of a production for her than her peer group. AS most of you know, her

CMT is

the Type 2 variant, which is the axonal form. There is no DNA test for it at

this

time and the diagnosis was based on a nerve conduction study and an EMG

(electromyography)

test. From my reading, I understand that severe gastrointestinal problems like

vomiting are more commonly associated with CMT Type 5, which is another axonal

variant of

this disease. I think it was Rose from Sweden who said that her son, who has

CMT Type 1,

wherein there is a breakdown in myelin (rather than the axon), suffers from

vomiting. I am assuming

you and/or your son have had a DNA test. If not, you may wish to explore the

diagnosis. I

am also trying to find (for you)the email address of someone who goes by the

" nom de plume " of

Mara LaRue because her son suffered a lot vomiting last year, which I think they

have

gotten under control.

Best of luck,

Barbara