Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Megan-Leigh-McDonald 04/27/2011

I'm just curious if anyone here goes to an in person support group as well? I'm trying to find one here in San Francisco.

deleted_user 04/27/2011

Nope, I've looked for one in Louisville, KY, too. I have thought of starting one but I take care of my Dad. He isn't demanding... just a little stressful on his really forgetful or paranoid days. Oh well, maybe sometime.
Good Luck finding one........ or starting one!
Go to a popular local radio station(s) and do one of those community interest/health interview/ad thingies with a good & popular dj during the prime drive times. You could give them a little "script" of questions they could ask, just to make sure you have the answer, in case it's a brain fog day:)

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deleted_user 04/28/2011

We have one here in the Netherlands. They send out a monthly newsletter with all the latest findings etc, and list docs, case studies, specialists and volunteers (who are also patients, who you can ring day or night for support) and will help you find consultants if you need help. They also organise days out, usually in hotels, with lectures from specialists and the inevitable Dutch coffee and cake :-) Never been to one though (but am a member of the 'vereneging' (organisation)) as they always seem to be too far away (I don't drive) and never seem to organise one in Amsterdam, where I am.

deleted_user 04/28/2011

We have one in the UK - a national one and then some local branches of it. Our local one is West Midlands. They are very helpful. You can Google them. You should search for them in the USA or why not start your own local one? Anyway, good luck!

deleted_user 04/28/2011

We just started one in Long Island, NY :-)

Megan-Leigh-McDonald 04/28/2011

@ momonthemoon: can you tell us all a couple of stories about how you got your support group started?

From what i've discovered, since Hemochromatosis is such an unknown condition here in the U.S. even amongst doctors, that may account for the lack of support groups for those of us in the U.S.

And it might be that I do need to get one started. I'm shocked at the lack of awareness in my community too...SF is one heck of an 'aware' city so it's even more surprising especially given how prevalent this is.

thx
Meg

deleted_user 04/28/2011

Megan,
We are new at it and it is just me and one other guy. We are having a hard time finding people to join. We are starting the HEMOCHROMOTOSIS SOCIETY OF NEW YORK and trying to get awareness out there about it. So far, the most support I am getting is from DAILY STRENGTH. You are all WONDERFUL!!!!

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