Interesting

[JanW]

Marta -- it's funny that you say 10 Weggies in one place what an unusual sighting, because when I was at the symposium everyone 'complained' about how Weggies just dominate the thing -- like you would ask people, "what disease do you have?" and they would go "Wegeners -- what else is there?" Made me feel bad for the people with Churg-Strauss or Bechet's!

[Geoff]

So I was thinking about the number of people who are sick working in that building. There are about two dozen people working in the building throughout the year altogether, however in my office and the one adjoining there have been 8 people working at those three desks over the last 3-4 years. Four out of the eight are currently sick with bizzare things and organ involvement. 50%!

I have heard about a condition called 'sick building syndrome' and one of my previous employers actually had the air/environment checked over as an unusual high percentage of employees complained of feeling 'un-well' in a new extension to the main office. Who knows what rubbish we are inhaling or ingesting.

[Psyborg]

Is Wegners one of the more common of the rare Vasculitis types? I know there are some types that are more common for sure. Also out of curiosity how do the various forms of Vasculitis compare in the seriousness of the condition. I understand that some are even worse than WG if treated incorrectly. I want to make sure when people ask me that I'm not leading people to the wrong conclusions

[Jack]

From the Lupus Foundation site -


Diseases Associated With Vasculitis

Vasculitis can occur in many different illnesses. Vasculitis can also occur by itself without any obvious associated infection or other illness. Some of the illnesses that can cause vasculitis are:

• systemic lupus erythematosus
• rheumatoid arthritis
• polymyalgia rheumatica
• scleroderma
• Wegener's granulomatosis
• temporal arteritis
• cryoglobulinemia
• erythema nodosum
• tumors
• leukemia
• lymphoma

[marta]

Marta -- it's funny that you say 10 Weggies in one place what an unusual sighting, because when I was at the symposium everyone 'complained' about how Weggies just dominate the thing -- like you would ask people, "what disease do you have?" and they would go "Wegeners -- what else is there?" Made me feel bad for the people with Churg-Strauss or Bechet's!

NO, that's funny. Weggies dominate a symposium. That's really funny. Just wait until the next one when we all show up wearing our gear. It'll be like a scene from some new age horror sci fi. "Feeed uuuuusssss"

[JanW]

At the symposium when you register you get a button for which disease you are associated with. WG has like 200 buttons on the table, Churg Strauss maybe 30, everything else, in the teens, probably.

The Vasculitis Foundation started as the WG Foundation (or similar name) and only changed a decade or so ago, to try to bring all the diseases together to get out of 'orphan disease' status (less than 200,000 patients in US). Still didn't make it. You can feel safe saying to most people who meet you that you will never meet another WG patient. That's why when a doc sees a couple of hundred patients, they will be an expert.

Psyborg, to answer you question, all of the vasculidies can be pretty devastating, and misdiagnosis is really common because of their rarity.

[Sangye]

Wow, the number of buttons says it all. What a great visual!

[Doug]

Front Page | Vasculitis Foundation

<>Behcet's Disease <>Buerger’s Disease <>Central Nervous System <>Churg Strauss Syndrome <>Cryoglobulinemia <>Giant Cell Arteritis (Temporal Arteritis) <>Henoch-Schönlein Purpura <>Hypersensitivity Vasculitis
<>Kawasaki Disease <>Microscopic Polyangiitis <>Polyarteritis Nodosa <>Polymyalgia rheumatica <>Rheumatoid Vasculitis <>Takayasu’s Arteritis <> Wegener's Granulomatosis

That is the Vasculitis Foundation list.

Amazingly, a person I know from ****** became ill a few months back with Giant Cell Arteritis. I recalled the disease from the list, so brought his attention to the Vasculitis Foundation. As with our disease when we first encounter it, information- quick!- is a significant need for people with my friend's disease, and is greatly appreciated when it comes in one straight-forward package.

When I was recovering from my initial flare of WG, it became necessary to move from a large home to an apartment associated with a care center. It was he and his wife who organized a group of people from our ****** to move our furniture and things to the apartment.

There is a nice squaring of obligation~repayment here, with both parties enriched for the encounters.