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

[lili]

Hi all

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

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 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 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 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 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!