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Welcome Tony

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Tony,

Welcome again to . By being a part of , you have now met over

800 people in the world with CMT! You said when you were diagnosed at

age 16 you were told you were the youngest in the world and now you are

44 - right?

I just would like to share a bit of my diagnosis with you: I was

diagnosed at age 10. I am now 51. There are a lot of others here at

that were diagnosed even before me in 1962. And so funny that in

1962 my foot surgeon told me I was one of only ten people with CMT in

the U.S. Now I know all this isn't true - many persons who are now

seniors were diagnosed way before me.

Would you be able to describe what you mean as " severe CMT " ? Have you

had the DNA test and do you know which 'type' you have?

It is wonderful you are outspoken when it comes to your CMT needs and

rights. May I ask how your rights were violated? What did you do?

I don't mean to pry; it is just that patient rights and disability

rights are issues I am very concerned about.

~ Gretchen

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  • 1 year later...
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Hi Tony,

Welcome to the group. Since I've been a member we've had one organized chat.

Since we are from all over the world it's hard to set a time when many can join

in. Hope to see you posting often!

Elaina/NY

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