fighting for CMT recognition

January 15, 2002

I am in full agreement here Sue. We need more people to share HOW they

live and personally I would like to see more people fighting for CMT

Awareness and recognition.

~ Gretchen (I did not follow my own request to snip as what Sue said it

too important and can be read over and over)

" Sue Horder-Mason " <sue@h...> wrote:

> > I agree totally with you and yes I thank God he only gave me

> CMT but for many of us it is a struggle to get both recognition and

> acceptance of CMT. But for many of us it's not quite so simple - we

> are stil fighting for recognition but with diagnosis and with the

> social security system regardless of which country we live in. that

> you have this disease.

> > And for some of us yes CMT will kill us but this is part of life's

> rich tapestry (I like cliches)

> > What many of us are trying to do is to fight to get a fair deal for

> everyone with CMT but more than that to get this disease recognised so

> more people can live decently instead of having to struggle and that

> goes for different countries they live in.

> > I appreciate that you're not happy living with CMT but neither or

> the rest of us. You only have to read the emails to see the struggle

> that others have to go through just so they can have a roof over their

> heads and some food on the table.

> > Yes I agree that you are blessed but many if not most CMTers are not

> blessed and they are the ones who keep on fighting.

> > Maybe you could help them by giving them advice?

> > You don't say how severe your CMT is but those in a wheelchair who

> are still trying to prove they have a progressive illness and need

> help and support would certainly benefit from your expertise.

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