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Thread: Wegeners Granulomatosis / GPA specialists

  1. #31
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    Default Re: Wegeners Granulomatosis / GPA specialists

    Until aged out, saw Dr. Melissa Cadnapaphornchai, Childrens Hospital Kidney Clinic.

  2. #32
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    Default 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

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  4. #33
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    Default 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.

  5. #34
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    Default Re: Wegeners Granulomatosis / GPA specialists

    Quote Originally Posted by little sister View Post
    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.
    Knowledge is power! Wisdom is using it to make good decisions!

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  7. #35
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    Default 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

  8. #36
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    Default Re: Wegeners Granulomatosis / GPA specialists

    my team of Specialists

    //////////////////////////////////////////

    Specialist name: Dr Anis Rauf
    Location (Country/State/City): US/ IL/ Lombard
    Area of specialisation (e.g. Rheumy, Immunologist etc): Nephrologist

    //////////////////////////////////////////

    Specialist name: Dr Anisha Dua
    Location (Country/State/City): US/ IL/ Chicago
    Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatalogist


    /////////////////////////////////////////

  9. #37
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    Default 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.

  10. #38
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    Default 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.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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