demographics

[vdub]

Has anyone ever posted a poll to see where everyone on the forum was from? Seems I read somewhere that WG is virtually unheard of in South America and Africa. It would be interesting to a gross demographic by country or region of where everyone on the board was from. Certainly not scientific, but sitll interesting. Maybe that has already been done....

[chrisTIn@]

Marta did.
When you click the link on top of this page, you can see the poll-results.
Most people on this forum are from the USA, Australia, New Zealand and some from Europe (Norway, United Kingdom and The Netherlands).
Whether WG is unknown in South America and Africa I don't know.

[vdub]

Yeap! That's what I was looking for. Seemed to me I had seen it somewhere and yes, it was starring me right in the face... I probably even responded. So much for my memory...

[pberggren1]

I think Andrew has some info on this as well. I suggest e-mailing or messaging him about it. I remember seeing a map of the world with countries in varying shades of one color to distinguish number of Weggies. But I think that is only number of Weggies on this site and there are thousands more around the world that are diagnosed already and thousands more that go undiagnosed year after year.

[Luce]

One reason there are so few cases of WG in South America and Africa is that it is a disease that predominantly affects Caucasians (white people).

[elephant]

Think about how poor South America and Africa are, many of them are dying of starvation and don't have a doctor. If they had a doctor they would not be checking Wegeners disease. So they are in that category of never getting the chance to be diagnosed.

[julia]

Language differences may effect which countries post.

[JanW]

The idea that WG affects mainly whites has been debunked, although of course you will see many outdated websites that say that. Researchers at the symposium said that it affects women and men equally (though in the past in had been thought of as a man's disease) and all of the races randomly.

I would suspect that the reason that many minorities in this country don't get diagnosed is lack of access to great healthcare. As for overseas, yes, your doctors have a lot more to look for vs. WG, and you may die before you ever get diagnosed.

I'm black, and a particular bugaboo of mine is when people say that blacks really don't get the diagnosis in any numbers because they aren't represented in VF literature etc. We are rare to be sure, just like all weggies are rare, but the barriers to access to healthcare (just getting to a vasculitis center from far away is a middle class thing, not something a poor person can easily do) make a difference in our ability to 'show up' and advocate for ourselves.

It's no surprise that the people I met at the Symposium were small business owners or professionals with the kind of flexible time and disposable income to attend.

[Psyborg]

I would venture to guess that anyone from a poor background would have a better than average chance of being missed in diagnosis. I know they treated me like a "drug seeker" and I was coming from a pretty good economic position. I know my black friends have more issues with that

[Sangye]

I can't even imagine being on Medicaid and seeking diagnosis. I bet a lot of undiagnosed Weggies die on Medicaid. I had it as a secondary insurance for awhile and it is just horrible coverage. It's very upsetting to me that the content of one's wallet is what decides whether one lives or dies in this country--or any country for that matter.