Are there any 'live' support groups?

[Guest guest]

Hi:

I'm in Western MA and discovered this group about 6 or so months ago.

My question is this? Are there any live support group meetings for

folks with PSC? Although I've never been I know there are UOA (United

Ostomy Association) meetings (I have an illeostomy).

Just curious. I figured if there are any at all there are probably

some around the MA area.

[Guest guest]

I'm about as far west as you can go in MA: town. It's not a big state,

but I think I

remember you are much closer to Boston than to me. I don't know of any support

groups

out here-we are pretty rural. There are support groups centered around the

transplant

unit at Beth Israel in Boston, and there is the American Liver Foundation which

may have a

Worcester chapter, closer to you. Neither would be PSC specific. You might call

Dr.

Marshall Kaplan's office at NEMC to see if they know of any. There are a number

of us in

MA and even in the greater Albany region who go to Boston for care.

Good luck,

Martha (MA)

>

> Hi:

>

> I'm in Western MA and discovered this group about 6 or so months ago.

> My question is this? Are there any live support group meetings for

> folks with PSC? Although I've never been I know there are UOA (United

> Ostomy Association) meetings (I have an illeostomy).

>

> Just curious. I figured if there are any at all there are probably

> some around the MA area.

>

[Guest guest]

im in mass too let me know too west bridgewater gailMartha wrote: I'm about as far west as you can go in MA: town. It's not a big state, but I think I remember you are much closer to Boston than to me. I don't know of any support groups out here-we are pretty rural. There are support groups centered around the transplant unit at Beth Israel in Boston, and there is the American Liver Foundation which may have a Worcester chapter, closer to you. Neither would be PSC

specific. You might call Dr. Marshall Kaplan's office at NEMC to see if they know of any. There are a number of us in MA and even in the greater Albany region who go to Boston for care. Good luck,Martha (MA)>> Hi:> > I'm in Western MA and discovered this group about 6 or so months ago.> My question is this? Are there any live support group meetings for> folks with PSC? Although I've never been I know there are UOA (United> Ostomy Association) meetings (I have an illeostomy). > > Just curious. I figured if there are any at all there are probably> some around the MA area.>

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[Guest guest]

Are there any live support group meetings for

> folks with PSC?

I too wanted a live support group (post transplant!) I personally was

not ready emotionally for my transplant and so wanted to talk with

other post tx patients. Since I knew Tim R and Tim L I bothered them

quite abit, but really wanted to talk to a woman about some female

issues. Thru Tim R, I met a post tx woman and thru a childhood friend

I met another post tx woman, and the 4 of us sat down with UofM

transplant social workers and convinced them they needed to help us

start a group.

It took several months but on Monday we will have our 7th meeting. And

it is getting bigger. We may break things up eventually, but for now

it is just so wonderful to talk face to face with someone who is on

the same meds or had the same concerns.

I thought I was doing this to help other post transplant patients thru

the healing process. Ha , I find I am still healing and it does feel

good.

We needed UofM to help us start the group as they have the master

mailing list. We all live in the metropolitan detroit area but there

was only one liver support group for hep c patients and one liver

group at henry ford (in downtown detroit). I do not believe any of us

are opposed to going downtown, but why should we when we all had our

tx's at the U.

My point is we spoke up and UofM listened. but it was not easy, but

very necessary and very beneficial. Talk to your transplant center.

Tell them you are ok if they want to give out your phone number to

other psc patients.

b.a.dalrymple

uc, psc 1978 ltx 2006

[Guest guest]

I do go to Marshal Kaplan so I'll ask them next time I'm there.

If there are none in MA if we have a few members I'd be

interested in starting one if a few members are willing. Wouldn't

have to be formal, just a talking group to talk about issues, not feel

alone, etc.

[Guest guest]

Dear Beth Ann,I'm so glad that MI was able to help you get a group together.I was just wondering if you could bring some of PSC Partners brochures to the groupand some of the physicians there.This would also help the social workers get the word out about our conferences.Also since I started the Kroger giving program there in Ann Arbor, please let everyone in the group knowthey can help support  PSC Partners Seeking a Cure. It is a wonderful free program and you can get registered cards throughme. If you want to know more just email me at:leedeubert@... LeeAre there any live support group meetings for> folks with PSC? I too wanted a live support group (post transplant!) I personally was not ready emotionally for my transplant and so wanted to talk with other post tx patients. Since I knew Tim R and Tim L I bothered them quite abit, but really wanted to talk to a woman about some female issues. Thru Tim R, I met a post tx woman and thru a childhood friend I met another post tx woman, and the 4 of us sat down with UofM transplant social workers and convinced them they needed to help us start a group.

[Guest guest]

The annual PSC Partners Seeking a Cure conference (May 2-4, 2008 at

the Mayo Clinic in ville Florida) is an ideal live support

meeting for PSC. It will be a gathering of a wide range of PSC

patients, caregivers and researchers, presenting the latest in PSC

treatment and theories for both adult and pediatric cases. I urge

everyone to consider making it part of your schedule for next year.

Small regional meetings of PSCers are possible but take a lot of

effort to get established and to continue. I think a more workable

alternative is to arrange for 2 or 3 to meet for coffee/lunch/chat at

a local establishment when at a PSC " hot spot " for clinic, vacation or

business by letting others know of your willingness to meet and the

times you'll have available. They may not have the continuity of

ongoing support meetings, but they do bring together PSCers who often

enough have never met another one.

Tim R