URGENT- which hospitals & docs best for Wegener's in California, Nevada or Western US

[Sangye]

It's heartbreaking to know the kind of lousy care some fellow Weggies are getting. Not to mention those that can't even afford to see docs because they're uninsured or underinsured. Thanks for clarifying about Dr Chung, Jan.

[JanW]

It was definitely the thing that Weggies complained about the most -- the ones from CA -- that there was no center there so even if you had a great rheumy, you might not get a very good ENT, even if most of your problems were in that area. I met a woman who gone to the last few conferences from SoCal, and her husband was the patient, and had WG for several years. He was in deep denial -- wouldn't even register for the conference or attend any of the sessions, and she said that they had already had a few docs 'fire' them because they questioned the quality of care (she raised one such incidence in an open session and you could see on the UNC's doc that she couldn't believe it -- although they never say anything against a fellow doc).

[flana]

Not sure what to say... but my Rheumi from Stanford, said last week, that if it were one of his family members who had WG, he would go to Cornelia Weyand at Stanford, and referred her to as the World Weg Specialist.

[Sangye]

Raj, not being familiar with Cornelia Weyand's name I did a quick online search. She seems to focus on giant cell arteritis and RA, not Wegs. Here's her Stanford page. In a PubMed (published research) search of her name and Wegs, I only got one article about inflammatory diseases in general. Nothing on Wegs. (To compare, I did a similar search of Drs Seo, Hoffman, Langford, Merkel-- all well-known Wegs docs. They had 13-20 papers published in their names.) I did a similar search of past and ongoing research studies at ClinicalTrials.gov-- which lists every drug trial in the US. She wasn't listed under any clinical trials at all.

I think your rheumy is seriously off base referring to her as the World Wegs specialist when she hasn't even published one article about Wegs and isn't participating in any of the clinical trials. Is this the same guy who thinks it's okay to keep you on ctx for 2 years?

[JanW]

I can do Sangye one better, Raj. I heard Weyand herself say that she is no specialist in WG, and defer questions about that topic while on a panel at the Symposium. It is quite right that she specializes in GC arteritis. I think the only WG specialist in NoCal is Sharon Chung, but she may be of a younger generation than Merkel, Seo and Langford...my sense is that she's an up-and-comer (this is still fine).

[Sangye]

LOL Tell your rheumy to put that in his pipe and smoke it!

[flana]

Is this the same guy who thinks it's okay to keep you on ctx for 2 years?

Thanks all...

Nah.. this is the one is Stanford (Dr. Utz), that has shared the same concern of me being on ctx for this long. I am not sure why he claims Weyand to be a WWS... I am also trying to secure an appt with Sharon Chung by EOY.

Oh and BTW they have been taking blood samples from me for some research that Dr. Utz has been funded for (ANCA associated Vasculitis).