Member Map

[vdub]

I thought I'd just give the member map a kick for anyone new to the forum.....
WegMap (http://www.zeemaps.com/map?group=242717)

[Sangye]

Wow, there are a lot more members on there. I'm glad you created it, vdub.

[Dryhill]

Yes there are a lot more on there than when I last looked. Well done vdub.

Jim

[alexciasmom]

Wow I thought I would look so I did not feel so alone. Lol.. I am the only one in Utah...

[Al]

Wow I thought I would look so I did not feel so alone. Lol.. I am the only one in Utah...I'm sure there are others--they just haven't heard of us, yet.

Al

[alexciasmom]

See that's why we love you!!! Your always keeping our chin up!!

[pberggren1]

In a city the size of SLC I am sure that there would be at least 100 other Weggies in the greater area and probably 200 or more total in the whole state.

[drz]

Some could use our help but haven't found this site yet. And others are probably getting along very well without us. Hard to imagine that, isn't it?:wink1:


I'm sure there are others--they just haven't heard of us, yet.

Al

[alexciasmom]

Phil had an idea he told me about once. He said to talk to my dr to see if I can get in touch with other wgs. Well the results are in. My doc says that between the wg vascular clinic and his other office theres only like 23 eg patients. And only like 3 of them are living in Utah. Wow I just don't believe this. Why u ask. Cuz I am not alone. Am not am not am not. I may be spoiled but not alone. Ok all hahas aside. Anyone know how to get the word out down here? Those poor people. I would be so lost with out you all.

[Sangye]

In a city the size of SLC I am sure that there would be at least 100 other Weggies in the greater area and probably 200 or more total in the whole state.
I just don't believe there are that many Weggies there. If there were, docs wouldn't be as unfamiliar with it.

[pberggren1]

I'm just going by what the other specialists say in my province of about 1 million people and what I see in my town and corner of the province.

When I talk to other Rheumys that treat Wegs here they say that there are at least 100 Weggies in Saskatchewan and maybe even as many as 200. That means Wegs here is around one in 5 to 10 thousand.

And in my city of 15,000 there is me and at least 3 others. And in the rural areas around Swift Current there are at least 3 others as well. So that puts the numbers closer to one in 5 thousand.

My doc and I have chatted about this a few times and he even says back in the UK where he practiced he said it was around one in 5 to 10 thousand.

And I was also the first one in my area apparently, going by what the other docs say, to be dx with Wegs.

[drz]

I'm just going by what the other specialists say in my province of about 1 million people and what I see in my town and corner of the province.

When I talk to other Rheumys that treat Wegs here they say that there are at least 100 Weggies in Saskatchewan and maybe even as many as 200. That means Wegs here is around one in 5 to 10 thousand.

And in my city of 15,000 there is me and at least 3 others. And in the rural areas around Swift Current there are at least 3 others as well. So that puts the numbers closer to one in 5 thousand.

My doc and I have chatted about this a few times and he even says back in the UK where he practiced he said it was around one in 5 to 10 thousand.

And I was also the first one in my area apparently, going by what the other docs say, to be dx with Wegs.

These numbers would be about the same for my area. My internist is no Weg guru and has three other patients in a town smaller than Swift Current. I also know of other Weggers who have left our area or already died so our numbers of Weg patients would be closer to 1 in 2500 or 3000. i doubt i know all of them and doubt my internist is only doctor seeing Weg patients since we have several dozen doctors in the clinic. At least half of them could be providing primary care for other Weg patients. I know concentration pockets do happen and these numbers might be very different in other communities and a lower ratio of 1 to 5000 or 10,000 might apply if looking at whole county or region.

[Dryhill]

In the Uk there are less (but do not know how many) than 10,000 with WG (GPA) and MPA the UK population is approximately 65m. This will give a GPA and MPA combined ratio of 1:6,500. Having said that there was a study done in East Anglia and it showed something nearer to one in a quarter of a million, but this area tends to be very rurual.

Jim

[Al]

In the Uk there are less (but do not know how many) than 10,000 with WG (GPA) and MPA the UK population is approximately 65m. This will give a GPA and MPA combined ratio of 1:6,500. Having said that there was a study done in East Anglia and it showed something nearer to one in a quarter of a million, but this area tends to be very rurual.

JimThese diseases are probably underdiagnosed (indeed, the are often missed altogether). Still, they are relatively rare.

Al

[vdub]

My rheumy has a drawing area of about 350k (I'm guessing) and he said he was treating 12 wegs patients... But, that's just one rheumy. There are proably dozen in the area (another guess)....

[Sangye]

I think the concentration pockets that you mention drz can really throw off the numbers. That's why I don't think we can extrapolate so easily to another city without knowing if it's in a concentration pocket or not.

[Al]

I think the concentration pockets that you mention drz can really throw off the numbers. That's why I don't think we can extrapolate so easily to another city without knowing if it's in a concentration pocket or not.Yes. Data along these lines drive epidemiologists crazy. How to know whether something is a statistical blip, or there is something about that particular concentration that is significant. This is not a trivial consideration.

Al

[mishb]

Take Australia for example.
The ENT I see in our City hospital told me that he sees hundreds of WG patients a year. I have no idea how many or what the percentage per capita would be,
but going by the map, there are only 3 people in Victoria with WG.
Where are the hundreds more and why haven't they found this site and if they have found it ......hey put your pin in the map guys :glare:

[alexciasmom]

I think the concentration pockets that you mention drz can really throw off the numbers. That's why I don't think we can extrapolate so easily to another city without knowing if it's in a concentration pocket or not.ok now I wanna grow up to be Sangye!!:D

[Sangye]

ROTFL No, believe me, you're better off being you.

[pberggren1]

Michelle, you are in a very large city with lots of urban areas around so the greater population he is drawing from is probably over 6 million people.

[mishb]

Michelle, you are in a very large city with lots of urban areas around so the greater population he is drawing from is probably over 6 million people.

So then, there are hundreds, but where are they......give us a pin people :tongue1:

[vdub]

My opinion is that the forum attracts the weggies who are in particularly bad shape. I believe there are a lot of weggies who have gone into remission and are relatively unscathed by wegs. Only newly-dx'ed people and people with severe cases are on the forum.

Newly-dx'ed people, typically come and go. They come to get some information about their new disease, ask a few questions, but then get bored if they don't have issues that directly apply to them. If they have a light case of wegs which is well controlled, then they have little reason to participate on the forum.

For a very brief moment when I was opened up for Asst Admin, I was able to look at the member numbers, number of posts, when they signed up, when they last posted, etc. Seeing those numbers is what brought me to the above conclusion...

BTW, the Asst Admin tag is just a title. There is no reality behind it. Someday maybe, but I think Andrew feels more comfortable handling things himself as long as he can manage. I would be the same way if it was my forum.

[Sangye]

I agree with you about who comes to the forum, vdub. I've been a member since fall of 2008 and have seen the patterns.

[Lightwarrior]

I agree with you about who comes to the forum, vdub. I've been a member since fall of 2008 and have seen the patterns.

I agree with both of you, it makes sense. Hopefully those Weggies who are well are living large for the rest of us. May the wind always be at their back and the Weggie dog sound asleep :hug3:

[pberggren1]

I'd have to agree with you as well vdub. I know 2 other weggies close to me that are on the forum but rarely ever post or come on.

[drz]

I'd have to agree with you as well vdub. I know 2 other weggies close to me that are on the forum but rarely ever post or come on.

When you check the map link: WegMap (http://www.zeemaps.com/map?group=242717)

you find names on the map that I don't recognize cause they seldom post any comments. Likewise there are people who post a lot that have not put a pin on the map. I also wonder about the large number of people who come and are very active for a short time and then seem to disappear. Hopefully they are all doing well and enjoying their life too much to take time to visit here. Some might get too sick to be active here or lose their internet access. But over all our members here are a rather self selected group of participants and most do not feel the need to be active here. Any thoughts on why?

[pberggren1]

the mother ship took them back.

[KathyB]

I'll admit I joined the forum early on because I needed info, answers, and to "talk" with folks who knew how I felt and what I was dealing with. Probably the same for all of us. It was my lifeline for quite a while, but I backed off a bit thinking I was too reliant on the "relationships" and needed to be more involved in what was going on in my life (mostly work-related). This spring I was so busy with downsizing after selling my house and moving, I wasn't online much. I was also trying to close out my work and needed to focus continually on what was next in my life. But I missed the forum and all of you in it -- while I haven't needed as much info and answers, I need the connection I feel with you all. It's tough for me to remember everyone, though! I'm getting to know Jack and Al more by reading some of their old posts. Hopefully, I can give a positive thought to a newbie as you did for me. So to make a long story short, we all seem to need the forum in different ways and at different times. Like our disease, we all have different needs. After my interaction with Al's wife Eileen when he passed, I decided to share more of what I do in here with my husband. Good move -- he gets it now when I sit for a while and just read/type!

KB