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vdub
02-07-2011, 10:43 AM
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....

02-07-2011, 11:28 AM
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
02-07-2011, 12:07 PM
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
02-07-2011, 03:58 PM
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
02-08-2011, 12:10 AM
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
02-08-2011, 03:27 AM
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
02-08-2011, 04:14 AM
Language differences may effect which countries post.

JanW
02-10-2011, 12:26 AM
The idea that WG affects mainly whites has been debunked, although of course you will see many outdated websites that say that.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
02-10-2011, 02:39 AM
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
02-10-2011, 02:48 AM
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.

vdub
02-10-2011, 03:45 AM
Clicky is a 2008 study with an update in 2009 and a review in 2011. UK study (http://www.patient.co.uk/doctor/Wegener's-Granulomatosis.htm)

Certainly, diagnosis or the ability to be diagnosised would play a huge part in the result of the study... However, many countries in Central/South America have med care on par with Canada, US, or Europe. Africa? Probably not so much with the exception of South Africa. But that's just a guess -- I've never been to So. America or Africa.

I have been to the PacRim many times and PacRim med is very good. Not sure about Indian medical, but regardless, India is seeing a higher incidence of auto-immune diseases.

Ancedotal evidence would suggest that WG probably afflicts Caucasians more than others. However, that is not to say it is limited to Caucasians. Jan being an example to prove otherwise.

I'm at the U of U now going through tests. I'll post a status on another thread about "seeing a specialist".

NicShaf
02-10-2011, 10:51 AM
I agree that it seems to me that it makes sense that people with a higher income and private health insurance would be diagnosed more often than someone on a lower income or some kind of subsidized health insurance, and that would explain why more rural countries don't have a higher number of cases.
I have been on both sides of the spectrum, and I remember when my husband didn't have medical coverage, it costs us hundreds of dollars to walk into a doctor’s office, so if he was just feeling "under the weather", we wouldn't have gone to see anyone...and that seems to be how a lot of Wegs symptoms start, I know mine did...I thought I had a bad cold.
At the same time, even having private insurance now, I still had to insist for MONTHS that something was wrong with me and see at least 6 different doctors before I was admitted into the hospital. If I didn't have a job that gave me the flexibility to do that, and the income to pay to see that many doctors, I would still be waiting for a diagnosis.
It's too bad.

Palmyra
02-10-2011, 12:32 PM
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.

Harsh reality JanW, and I am sure you are largely correct. The economically disadvantaged have no means to obtain a diagnosis. Here in the USA, I have online 'friends' that simply do not have the educational background to navigate this site, advocate for themselves with a physician, let alone have the dollars needed to attend a symposium.

That said, autoimmune diseases in general are reported to affect women more frequently than men (that may or may not prove to be true), and I have read that genetic predisposition to AI disease is an actuality. Some races do appear to suffer from certain conditions ( ie, certain infectious diseases, or genetically determined conditions,) more frequently than others, based on genetic make-up.

On our previous visits to the Mayo Clinic, Ulrich Specks had as an intern a young doc from S America. When my daughter visits Chile, she has his name available in the event of need. One of his goals was to treat those in Chile that may not have had access to diagnosis/treatment previously, and to report on demographics. Much to learn...