Research due to a cluster of wegeners diagnosis in South Wales, UK

[lili]

Hi all :biggrin1:

My partner Ryan, was diagnosed with having Wegeners in January, we have since met or heard about 10 other people living within approx 2 miles of us all with the RARE disease. My partner has recently been re-admitted to hospital with an exacerbation of the disease. He has been told by his consultant that there are 5 other people on the ward at the moment who have been recently diagnose with the disease (again all local to us). When Ryan explained about the other people his consultant asked if we could get as much information from them as possible, and she will contact neighbouring hospitals to see if they have had the same thing.

If there is anyone on here from the South Wales area please contact me, also If anyone on here has heard of a similar thing near them please let me know.

Thanks All

[Rose Cozzette]

Hi all :biggrin1:

My partner Ryan, was diagnosed with having Wegeners in January, we have since met or heard about 10 other people living within approx 2 miles of us all with the RARE disease. My partner has recently been re-admitted to hospital with an exacerbation of the disease. He has been told by his consultant that there are 5 other people on the ward at the moment who have been recently diagnose with the disease (again all local to us). When Ryan explained about the other people his consultant asked if we could get as much information from them as possible, and she will contact neighbouring hospitals to see if they have had the same thing.

If there is anyone on here from the South Wales area please contact me, also If anyone on here has heard of a similar thing near them please let me know.

Thanks All this is remarkable! there is one other in my small town with wegeners, but diagnosed 25 yrs apart. there are also what seems to me to be a larger number of us down the front range of the Rockies in Colorado. ???

[Jules]

Nowhere near that many in Sevenoaks,Kent, but my GP was shocked to have two of us on his 'books'! He said one case in a GPs lifetime would be unusual, so we have decided that two cases makes him almost a specialist!!!!! :-)

[DEE]

My gp has two of us on his list too and we both live in a small village.

[drz]

Our old work site only had a couple hundred employees but three Wegener's cases, several more other autoimmune disorders, and a couple dozen types of cancers. We concluded it probably wasn't a healthy place to work.

[lili]

Our old work site only had a couple hundred employees but three Wegener's cases, several more other autoimmune disorders, and a couple dozen types of cancers. We concluded it probably wasn't a healthy place to work.


Wow that's not good :scared: dare i ask what the factory did? The area that seems to be the common link for us is a small mining village (can't spell sorry). Had a factory there prev. where sevral employees got breast cancer :sad: maybe a link there. It's so worrying!

[pberggren1]

I am my GP's only Wegs patient I believe but my Wegs specialist has me and another guy coming next week for the firts time.

[gwenllian111]

Gosh, i'm in South Wales! Cardiff! and I've not met anyone else with WG yet!!!!

[drz]

Wow that's not good :scared: dare i ask what the factory did? The area that seems to be the common link for us is a small mining village (can't spell sorry). Had a factory there prev. where several employees got breast cancer :sad: maybe a link there. It's so worrying!

It wasn't a factory but it was an old building with lots of asbestos and also had a garbage burner for the city on the campus that burned lots of toxic stuff and the fumes would come in the air conditioners and open windows. I also recently learned of another case in our small town but don't know if she worked at the same place or not so that means at least 4 confirmed cases where the stats would suggest that we should maybe have less than one case.

[pberggren1]

Gosh, i'm in South Wales! Cardiff! and I've not met anyone else with WG yet!!!!

What's up with that, hey? You really need to get out more Gwen! :wink1:

[vdub]

ArlaMo and I used to go to the same Rheumy. Prior to going to SLC, I asked him how many WG patients he had. Believe he said 10, but it might have only been 6 -- can't quite remember. For a town of 250,000 and maybe triple that amount in the 100 mile drawing area, even 6 is right at the stated 1 per 100,000. But that is for just one rheumy. I'm just guessing, but there must be at least 20 rheumys in the area.

Jennifer, also on this forum, has WG Pit like I do. The incidence of WG Pit is 1 in 10 million. She is the only other person I know with WG Pit, so that statistic might hold up.

[marta]

Hey vdub, my doc is treating a patient with WG pit as well. So there three of you rare birds. I immediately thought of you when she mentioned it. I don't know if it's a male of female or how old, she just mentioned it in passing when we were talking about my liver and how rare it is.

I also mentioned my hypothesis that my particular case was caused by the H1N1 vaccine, and she said I'm the third patient who's made that connection. She said she would ask her coleagues at the conference in Toronto if they've heard similar stories.

[pberggren1]

There are at least 3 other Weggies in my area that I know of. My city is about 17,000 and surrounding area of a 100 mile radius brings in about another 25,000.

[pberggren1]

That is very interesting Marta about the H1N1 connection. What is your docs name?

[vdub]

I would love to hear from her if she wants to send a PM. I'd like to compare notes/treatment/etc. I'd particularly like to know if she was part of the lucky 17% who got her pit back up and running. Believe Jennifers is partial. Mine is totalled....

[marta]

That is very interesting Marta about the H1N1 connection. What is your docs name?

It's not really applicable to you old hands at Wegs, but there seem to be a lot of people diagnosed after the global freak-out with the H1N1. I got my first symptoms 2.5 months after getting the vaccine (and was diagnosed four months after that) and then when I had the flu shot this fall (in which they added the H1N1 vaccine this year for the first time, so you had no choice but to get it if you want the flu shot - and I was told by my docs that I should because of being immune compromised) I got symptoms two days after getting the shot which turned into a full blown flare within two weeks (when I landed back into a hospital bed) - and I was doing really good at the time, just about to get off cyclophosphamide....

My doctor's name is Dr. Elaine Yacyshyn. She rocks. She is absolutely awesome and I love her. I'm so glad I fired the old rheumy and searched her out. She trained at Mayo, and WG is her specialty and her passion. Mention her to your docs Phil, they might want to get on the Vasculitis train that she's a part of for Canada. They have a website started (it hasn't moved much lately - I offered to help them out if they like) and here's the main page - also a good reference for Canadian doctors who specialize in Vasculitis... InformationCanVasc (http://www.canvasc.com/InformationCanVasc.htm)

[marta]

I would love to hear from her if she wants to send a PM. I'd like to compare notes/treatment/etc. I'd particularly like to know if she was part of the lucky 17% who got her pit back up and running. Believe Jennifers is partial. Mine is totalled....

As I said, she just mentioned it in passing. I don't know that he/she's on this forum. My doc can't tell me who or what or connect us due to confidentiality issues, but she did say that if I get her some contact info about the book I'm putting together with all of our stories - hint hint, nudge nudge, wink wink ---- i.e. start writing people, she will pass it on to her Wegener's patients in case they want to submit their stories. I will put something together and send it to her. I should probably do it before she goes to Toronto and she can pass them on to other Wegener's docs to pass on to their patients.

If ever I hook up with that person, I will definitely let her/him know about you and hopefullly you can hook up. I'll ask my doctor though on our next visit (3 months from now) if her Pit patient got their pituitary going again. Worst thing she can say is 'take a hike Marta'.

[pberggren1]

As I said, she just mentioned it in passing. I don't know that he/she's on this forum. My doc can't tell me who or what or connect us due to confidentiality issues, but she did say that if I get her some contact info about the book I'm putting together with all of our stories - hint hint, nudge nudge, wink wink ---- i.e. start writing people, she will pass it on to her Wegener's patients in case they want to submit their stories. I will put something together and send it to her. I should probably do it before she goes to Toronto and she can pass them on to other Wegener's docs to pass on to their patients.

If ever I hook up with that person, I will definitely let her/him know about you and hopefullly you can hook up. I'll ask my doctor though on our next visit (3 months from now) if her Pit patient got their pituitary going again. Worst thing she can say is 'take a hike Marta'.

The trouble is I know Marta will take a hike, something like 30km up 8,000ft. of mountain. LOL

Thanks Marta for that website canvasc. I will mention it to my doc and see what he says.

[Sangye]

Marta, you can give your doctor Vdub's contact info with his written permission to pass it on to her patient. Then the patient can contact him if s/he wants. Ba-da-bing-- no confidentiality problems. :wink1:

[Rose Cozzette]

It wasn't a factory but it was an old building with lots of asbestos and also had a garbage burner for the city on the campus that burned lots of toxic stuff and the fumes would come in the air conditioners and open windows. I also recently learned of another case in our small town but don't know if she worked at the same place or not so that means at least 4 confirmed cases where the stats would suggest that we should maybe have less than one case. I still think that our toxic environment is the culprit, causes chronic allergies and possibly asbestos exposure, since no one really thought abt it before and is everywhere. as well as polluted water. so I still say we will all turn into cockroaches someday! lol

[Daggar]

...... so I still say we will all turn into cockroaches someday! lol

Rose - some quicker that others -- some of our politicians have already made that transition!:wink1:

[Rose Cozzette]

Rose - some quicker that others -- some of our politicians have already made that transition!:wink1:Daggar, well some are snakes but thats another matter! perhaps getting wegners would help them?

[marta]

I still think that our toxic environment is the culprit, causes chronic allergies and possibly asbestos exposure, since no one really thought abt it before and is everywhere. as well as polluted water. so I still say we will all turn into cockroaches someday! lol

I agree that this is at the very least partially to blame. I'm reading this book right now and it's exactly about that - check it out Slow Death By Rubber Duck (http://slowdeathbyrubberduck.com/)

Daggar, sounds like you're getting into the election woes. I feel like the cockroach transition has taken place in Ottawa too, although I'm not allow to voice my opinion, since I work for the government...

[Rose Cozzette]

I agree that this is at the very least partially to blame. I'm reading this book right now and it's exactly about that - check it out Slow Death By Rubber Duck (http://slowdeathbyrubberduck.com/)

Daggar, sounds like you're getting into the election woes. I feel like the cockroach transition has taken place in Ottawa too, although I'm not allow to voice my opinion, since I work for the government...I told this to my reg doc and he disagreed,I wonder why the sciences are so resistant to what is right before us?? will read the book. thanks

[vdub]

you can give your doctor Vdub's contact info
Marta, I PM'ed my contact info to you. Feel free to pass it on to the doc. My life is pretty much an open book.... It's not on the best-seller list, tho....

[sue7211]

I met a couple of women from Prince Edward Island last year. They both have WG and said that everyone there knows someone with WG and they wonder why someone isn't studying it since they have such a large group of people in one area.

[pberggren1]

Where are you from Sue?

[sue7211]

Berkeley, CA USA.

[pberggren1]

I've always wanted to visit California. Now I have one more reason to.

[Rose Cozzette]

Marta, you can give your doctor Vdub's contact info with his written permission to pass it on to her patient. Then the patient can contact him if s/he wants. Ba-da-bing-- no confidentiality problems. :wink1: thought you would like to know I had 3 moles removed and all were ok, still itch from the stitches. will get some skin tags removed tomorrow. saw new ENT in Denver and he said all looks really good in the sinus and throat, no stenosis. gave Rx for nose spray and did help but is very strong, can use only occasionally, called panatase and nother with preds in it but haven't used it yet. still decreasing the preds. :mellow: