Doctors in the Boston Area

March 17, 2004

Hey,

Does anyone know if any good doctors for Charcot Marie Tooth in hte Boston

area? I have been going to Shriners since I was five, but as I turn twenty-one

next year, I am about to be vacated due to age. lol So, I am on the lookout for

someone who can treat me for my " adult " years.

I just turned 20 on Monday. I was diagnosed at age three and grew up in New

Hampshire. I have had four operations. One at age six, eight, nine, and

fourteen. I wore braces (AFOs) from the time I was five to about when I was

fourteen/fifteen. My Dad loves sports of all kinds, especially basketball, and I

was a

tomboy growing up, so I always played rec sports. I began riding horses when I

was ten. Not in a therapeutic program... In a regular lesson program. I used

to do hunters, but since I have started attending college a year and a half

ago (at the University of Kentucky. Go Cats!), I have started riding for their

dressage team. It is very important to me to find a doctor who won't suggest

surgery as the first option and who will support me in my riding, as it is so

very important to me.

I had an appointment with a Dr. Rix on Tuesday. He is a general orthopedist.

He looked at my feet for a while and pronounced my CMT too severe for him to

treat. He suggested finding a specialist. Does anyone know of any good CMT

specialists in Boston? or the New England area? Any help would be greatly

appreciated.

Liz

March 18, 2004

Liz,

Wow, you have done so much! And I remember when you were 15 and riding

too! I'm so happy for you being on UK's Dressage Team. I'm proud of you

too! I just know one of these days I am going to see you on the Olympics

Dressage Team.

OK, as for docs, have you tried to contact either Harvard or Yale to see

if their neurologists/orthos are available? I know both U's have done

research in CMT so they are familiar with it.

Happy 20th birthday!

~ Gretchen

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