Re: what Dr.'s tell you/getting the word out about CMT

[Guest guest]

In a message dated 1/18/00 2:19:12 PM Pacific Standard Time,

warrenre@... writes:

<< agree it is frustrating to live with and explain a disease that is not

" mainstream " . But I think we all here have a unique opportunity

to get the name out in the public forum more often. The first thing we can

do is respond honestly to the questions friends and family members and even

strangers ask us about CMT >>

I used to think one day I would run into someone that was asking me what I

had because they had it or new someone with CMT. It has not happened yet. I

am picky now who I share my CMT with. People need to know when to ask. Not

just because they are curious.

[Guest guest]

Hi ,

You are absolutely right to be careful about who you share your CMT with.

We all have to work within our own comfort zones on this matter. For some,

it will be a major step just to be able to talk openly within the family.

(I have seen several posts about parents who will not discuss the topic much

with their own grown children...) For others, the step will be taken in a

discussion with close friends. After that, the next level is with casual

friends and co-workers. And finally, some of us will be able to start

talking openly about CMT in the public forum and with strangers.

It doesn't matter where we are in this process. My point is the more we

TALK about CMT outside this group the more we will be adding to a better

public awareness of CMT. This process takes a long time but every

contribution is important, whether on the family level or with strangers.

Ruth Warren

>From: JACEE17@...

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>Subject: Re: what Dr.'s tell you/getting the word out about CMT

>Date: Tue, 18 Jan 2000 21:32:43 EST

>

>From: JACEE17@...

>

>In a message dated 1/18/00 2:19:12 PM Pacific Standard Time,

>warrenre@... writes:

>

><< agree it is frustrating to live with and explain a disease that is not

> " mainstream " . But I think we all here have a unique opportunity

> to get the name out in the public forum more often. The first thing we

>can

> do is respond honestly to the questions friends and family members and

>even

> strangers ask us about CMT >>

>I used to think one day I would run into someone that was asking me what I

>had because they had it or new someone with CMT. It has not happened yet. I

>am picky now who I share my CMT with. People need to know when to ask. Not

>just because they are curious.

>

>

>---------------------------