SUPPORT GROUP

[Guest guest]

Okay everyone..here I go with yet another " idea " .

Do all of you remember how " lost " you felt when first learning that you had

PSC? I remember thinking that I must be the only one that had it. Well,

obviously with the size of this group, I am not. I didn't know where to

turn, and before I started this group..there was nothing out there for us

PSCers. We had the other support group, but we didn't have anything that was

JUST for us.

Well, my idea is:

I don't want ANYONE with PSC to feel lost, and hopeless. And, as we all

know, not everyone owns a computer. How would everyone feel about contacting

the GI's in their area, state, etc. and giving them your name, and/ or

address, or some way of contacting you, to be given out to their PSC

patients? If you couldn't start a support group for your area, maybe you

could at least send each patient some literature about PSC. Until talking to

all of you, I thought that I had been handed a death sentence. My GI didn't

know very much about the disease, and couldn't really tell me a time frame

for life expectancy. It was a horrible feeling. Let me know what each of

you think about it, maybe I am just going over board.

Love,

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