Wegeners Granulomatosis / GPA specialists
I was going to set up a website/directory that would be a source of WG/GPA specialists. That's not going to happen any time soon so we'll use this thread to start to create the data that may eventually get used in the directory.
So here's what I reckon. Copy/paste the template below and fill in the detail and post in this thread. This can be a source of information for all and I'll make the thread a 'sticky' and link to it from the front page.
Note: this is information that you would normally respond with to a question regarding "what specialists are in my area" or something similar.
NOTE: No contact information should be published at this stage. People can Google name and location.
Go...
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Specialist name:
Location (Country/State/City):
Area of specialisation (e.g. Rheumy, Immunologist etc):
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Re: Wegeners Granulomatosis / GPA specialists
Hi Pete! Is Alexandra Brazilian? Just curiosity, maybe she know Dr, Bóris who treats my GW.
Re: Wegeners Granulomatosis / GPA specialists
Re: Wegeners Granulomatosis / GPA specialists
Re: Wegeners Granulomatosis / GPA specialists
Our daughter has been treated by several Pediatric rheumatologists. One I recommend without hesitation is Suhas Radhakrishna, who works out of Rady Children's Hospital in San Diego, CA. Also, I have a shorter history with but was completely impressed by Pediatric rheumatologist Dr. Caroline Chang who is in Honolulu HA
Re: Wegeners Granulomatosis / GPA specialists
Dr. John Cush,Rheumatologist, Dallas, TX. I have been seeing him for the past 11 years. He is great. He took over Dr. J Donald Smiley’s practice when he died...who I started seeing in 1982 when he diagnosed me. I have had WG for 37 years with 3 flares.
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Re: Wegeners Granulomatosis / GPA specialists
Specialist name: Dr Pamela Freeman
Location (Country/State/City): US, Orlando, FL
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist
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Traveled from Denver to see Dr. Phillip Seo, Rheumatologst, at John Hopkins in Baltimore, MD
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Until aged out, saw Dr. Melissa Cadnapaphornchai, Childrens Hospital Kidney Clinic.
Re: Wegeners Granulomatosis / GPA specialists
Specialist name: Dr. Athan Tiliakos, Emory Clinic, Emory Hospital
Location (Country/State/City): United States / Georgia / Atlanta
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist, Vasculitis
Specialist name: Dr. Alexandra Villa Forte, Cleveland Clinic, Vasculitis
Location (Country/State/City): United States / Ohio / Cleveland
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist
Re: Wegeners Granulomatosis / GPA specialists
Any GPA docs that are nephrologists? My experience is that division of rheumatology doesn't treat you if your kidneys become involved.
Re: Wegeners Granulomatosis / GPA specialists
Quote:
Originally Posted by
little sister
Any GPA docs that are nephrologists? My experience is that division of rheumatology doesn't treat you if your kidneys become involved.
My experience was having several specialists that all made recommendations to the one doctor who weighed and balanced the recommendations and made the final orders for treatment. They often conflicted since a treatment that might help one organ might be dangerous for another organ. My health care director consulted with this primary doctor to select what they thought was best option for treatment depending upon current status. One of the many specialists were nephrologists along with at least a half dozen others. They also consulted with several world known experts on how to treat my Wegener's GPA.
Re: Wegeners Granulomatosis / GPA specialists
Here's who I see.
John Niles, MD
Vasculitis and Glomerulonephritis Center at Massachusetts General Hospital, Boston, MA, USA
Nephrologist/Internist
Re: Wegeners Granulomatosis / GPA specialists
my team of Specialists
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Specialist name: Dr Anis Rauf
Location (Country/State/City): US/ IL/ Lombard
Area of specialisation (e.g. Rheumy, Immunologist etc): Nephrologist
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Specialist name: Dr Anisha Dua
Location (Country/State/City): US/ IL/ Chicago
Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatalogist
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Re: Wegeners Granulomatosis / GPA specialists
Tampa Florida - part of Vasculitis Foundation - sees GPA patients every Wednesday
Yih Chang Lin, MD, USF - Division of Rheumatology
Dr Lin is very knowledgeable, bedside manner is more of a scientist than health care worker, however I have worked hard on making the relationship more heartfelt. I even bring him things I learn from here and from AI engines on cutting edge medications, etc. I trust his expertise.
My ENT doctor is Dr Jonathan Forman, in south Tampa, phone # 813-877-3100. he is extremely caring and has helped with the damage to Nose, Ear and Throat.
Re: Wegeners Granulomatosis / GPA specialists
My new GPA doc. She’s a good listener and is maintaining my treatment regimen.
Lynne Fussner, MD
The Ohio State University Wexner Medical Center
Department of Pulmonology
(614)293-4925
She did a vasculitis fellowship under Ulrich Specks at Mayo Clinic.
I reluctantly left Dr VillaForte at Cleveland Clinic because the drive was getting to be too much.