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Local support groups

This topic has 5 replies, 1 voice, and was last updated 17 years, 5 months ago by Terri.

Viewing 6 posts - 1 through 6 (of 6 total)

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November 11, 2006 at 10:07 pm #15965

Jim
Member

Is this message board your only support group? I’m not referring to family and friends but to groups where you get together with other MDS folks on a regular basis. While this board has been very helpfull to me, I’d like to find a local group but haven’t had any success. The closest I’ve come is cancer groups. While there are simularities, for me it’s just not the same.

What’s been your experience? Has anyone else found local support groups or does this board meet your needs?

JW

November 11, 2006 at 11:59 pm #15966

patti
Member

Jim,

This is the only place I get any support for me. I haven’t heard of anything in the big city nearby us. For me, this board is very helpful because of the time constraints of raising a family, etc. But I know for my MIL that if she had a place to go and talk to other MDS folks she would like it. Which, of course, means I’d have to take her and thus I’d get the support also. So, I suppose a local group would be a win win for us.

patti

November 12, 2006 at 12:44 am #15967

SandyB
Member

I believe the MDS Foundation has a support group in Philadelphia, and are possibly looking at other locations. That what I was told in the spring, by a person at the MDS Foundation Office.

November 12, 2006 at 2:07 am #15968

Jimbob
Member

Some people with MDS will get involved with the support groups from the Leukemia and Lymphoma Society. There is a group in almost every city. In Portland there are groups for various ages, types of related disease, pre or post transplant, survivor group and caregiver groups.
Jim

November 12, 2006 at 2:08 am #15969

Jimbob
Member

Some people with MDS will get involved with the support groups from the Leukemia and Lymphoma Society. There is a group in almost every city. In Portland there are groups for various ages, types of related disease, pre or post transplant, survivor group and caregiver groups.
Jim

November 14, 2006 at 2:07 am #15970

Terri
Member

The AA, MDS Intl org the other website I visit does have support groups around the country but not in every area they are looking for people to volunteer. One of the other patients with MDS at our doctors office Wife was trying to organize one here in South Florida, Her husband has recently passed and she is even more committed to doing so. Bob and her husband got very friendly and it was a good support for both, It really hit Bob hard when he passed. I stay in touch with the family and look to get involved with this group as well.
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