Just wondering how many people actually have access to such a group?
What is the experience like?
Just wondering how many people actually have access to such a group?
What is the experience like?
Probably in more highly densely populated areas there would be support groups. I have met 2 other Weggies myself. I could pobably meet more if I had more money to travel and felt better and had more time.
There is a Vasculitis support group run by my hospital, but I've never attended because I've never felt the need. Am I antisocial? I'm not sure that I want to chat about illness for an hour, I'd prefer to talk about cars.
I like the forum because I can pick and choose what subjects I feel I can contribute to and if I'm having a grumpy moment I needn't reply to anyone.
Never met a nother Weggie in person. Spoke to a couple on the phone. As far as I know (and admittedly I've never checked) there's no support group in my area.
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
First time I will meet other Weggies will be in Long Beach, and I live right outside of NYC. A support group used to meet in my ENT's office, but I think that the woman organizing it went into remission, had kids and could no longer do it. However, I much prefer to talk to people on line and suspect that it would always be that way, no matter what kind of issue I was dealing with. I prefer this mode of communication.
I seem to remember reading a Sci-Fi novel where all communication was via video link. The main character caused quite a stir when he went visiting people in person.
I think there's a group out here somewhere, but I feel the same way. I'm certainly limited by how I feel and other transportation issues. But it would be impossible to meet occasionally and get the same type of interaction as we have here. Good mood, bad mood, hope, despair-- it all changes so quickly. I love the "dinner table conversation" feel of this group.
I suspect that if people wanted video links then, everyone could be doing it free on Skype now but , IMO, you can be more honest from a distance in your comments and also whilst we are united by WG closer relationships may not work.............although it would be interesting to know more. Wg also makes me NFI (work it out!) in one on ones as it just seems to much hard work with a fuzzy head.
But back to the original question know of no support groups at all. Know of one other WG sufferer in remission in the area but not contacted her yet. (works with my daughter).
I want a muffin, too. I live in a large metro community in the US (Texas...why I have no clue! Please figure out a way to get me out of here!), and just went to a VF local meeting this past Saturday. Guest speaker was a local young rheumy that did 2 years under Doc's Stone and Seo at John's Hopkins. It was nice to get together face-to-face with others dealing with similar issues. Really not so different from these forums.
It was also good to hear a young doc speak, that once saw so very many Weggies at JH, and now that he is in private practice here, he sees very few. He did offer insights as to how that affects most local docs and how they practice.
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