Names & Locations of Specialists

[Sangye]

Let's start a thread with the names of great docs. I don't think we need to put the VF docs, but you can if you like.

If a rheumy isn't a VF doc but knows Wegs very well, please list them. It would be helpful to know approximately how many Weggies s/he has treated.

Also, list other specialists you've discovered in your travels.

I'd like to keep this thread on topic as much as possible so that it can remain a good resource for newcomers and those of us looking for specialists all over the world.

[Jack]

Prof Caroline Savage
Prof Paul Bacon
Dr Paul Cockwell

All part of a vasculitis research team at the Queen Elizabeth Hospital, Birmingham.

The team have published lots of papers and seem to have a world reputation. The BVAS system for diagnosing Wegener's was developed here.

[pberggren1]

Jack, what is the name of the doc that cared for you that is now reitred? I think you said that he treated you for a number of years and knew Wegs fairly well.

[Jack]

That was Dr. Adu. He was part of the same team. Oddly, they seem to be mostly Renal people, but I think Bacon is Rhumatology.

This is him - http://www.era-edta.org/adu.htm a very approachable doctor.

[JanW]

My ENT, Dr. Robert Lebovics, Manhattan. Expert on ENT WG issues. He was the clinical director under Drs. Langford and Hoffman (now at CC) at the National Institutes of Health.

[elephant]

Wegeners specialist - Dr Carol Langford at the Cleveland clinic in Ohio.

[Sangye]

Wegs rheumy -- Dr Philip Seo, Johns Hopkins
Neuro-Opthalmologist-- Dr Prem Subramanian, JHU; specializes in pseudotumor cerebri (elevated intracranial pressure)
Dermatologist -- Dr Walter Giblin in Rockville, Maryland
Ocular immunologist-- Dr James Dunn, JHU; specializes in autoimmune diseases; only saw him once because I don't have Wegs eye involvement

[ranpar01]

Sharon Chung, MD (UC San Francisco)
She is a VF Rheumatologist, one of the few in Northern California.

Dr. Pedro Ruiz at California Pacific Medical Center is also very good and sees a lot of WG patients. He is not listed as as VF doc. When he treated my Dad I aksed him how many WG patients he has treated, and he indicated that he had seen several hundred. For comparison - our local doc had seen two, and that was counting my Dad... so we drive to SF now.

[Tim Roberts]

As I live in St. Cloud, Minnesota (which is about 2 1/2 hours from Rochester, MN) I would really like to know the name of Wegener's experts at the Mayo Clinic in Rochester. Anyone have a name? Any help will be greatly appreciated!

[elephant]

I recently looked up one in Mayo ( Minnesota) Dr Eric Matteson 507-284-8450. Don't know anything about him.