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Thread: Hello from Philadelphia

  1. #1
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    Default Hello from Philadelphia

    Hello All!!! My name is Jade and I am on here to help my Dad who was diagnosed with Wegener's.
    He lives in the suburbs and have been to doctor after doctor and it seems like no one is on the same page.

    He had just finished up 4 treatments of Rituximab and he is just getting worse...He can not hear, he has to walk with a cane, he is in pain all the time...he sleeps all day/night...he cannot hold his urine and is wearing diapers. He is 60 and has some other health issues IE over weight, diabetic etc.....

    Can anyone recommend a specialist in the Philadelphia/NJ/NY area where I can take him.

    Many thanks for any help.....

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    Welcome to the forum. (The Batman avatar is for a forum member who recently passed away.) You have come to the right place to get answers for your dad. I'm on the west coast and not the one to recommend doctors in that area, but there are sure to be some, and it is very important to get someone known as a specialist with the most WG experience possible. You might check this list from the Vasculitis Foundation: VF Medical Consultants .
    These docs will consult with other docs for free. But your best bet is to go to one of them or someone equally qualified, and I hope you'll get some names here soon. Best wishes to your dad, and I hope things turn around for him.
    Anne, dx'ed April 2011

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    Hi Jade and welcome to the forum.

    Thankyou for being here for your dad - it certainly sounds like he is having a rough time.

    I'm sorry that I cannot help with and specialist names - unless you want to come across to Australia

    I look forward to following your dads journey over the next few weeks/months
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome Jade! I live in Philadelphia and grew up in the suburbs (Bucks County). One of my first symptoms was a pseudotumor in my orbit and I was 17 at the time, so we headed right for CHOP because cancer was a concern. My dad also worked at the Hospital of the University of Pennsylvania so after that I strictly stuck with doctors at Penn.

    Now I see Peter Merkel at Penn and I think he's awesome. Last I heard, which was about 2 months ago, he was accepting new patients so you may want to give the practice a call and see if he has any openings. He only has clinic on Wednesdays because he's heavily involved with research, just an FYI. He's also on the list of VF Medical Consultants Anne posted above. He's very very knowledgeable and he's an easygoing guy. In general, I really like the Rheumatology practice at Penn. I've been going there for about 6 years now and the staff is very friendly. As far as I know Dr. Merkel is the only Vasculitis/Wegs doctor there but he does have two fellows who work with him.

    I don't know of many Philly people on here although I do think there are some Jersey/NYC people... maybe they will chime in. If you have any more questions about doctors at Penn, let me know! Good luck to you and your dad!
    Diagnosed October 2012

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    Jade,

    Peter Merkel at U.Penn has a very good reputation.

    In NYC the leading Wegs doc and researcher is Dr. Robert Spiera (1088 Park Avenue, 212-860-4000). I see him every few months and he coordinates care with my local rheumatologist.

    Dr. Seo at Johns Hopkins in Baltimore is also a leading Wegs doc and researcher.

    Good luck to your dad and you.

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    Quote Originally Posted by jadelow75 View Post
    Hello All!!! My name is Jade and I am on here to help my Dad who was diagnosed with Wegener's.
    He lives in the suburbs and have been to doctor after doctor and it seems like no one is on the same page.

    He had just finished up 4 treatments of Rituximab and he is just getting worse...He can not hear, he has to walk with a cane, he is in pain all the time...he sleeps all day/night...he cannot hold his urine and is wearing diapers. He is 60 and has some other health issues IE over weight, diabetic etc.....

    Can anyone recommend a specialist in the Philadelphia/NJ/NY area where I can take him.

    Many thanks for any help.....
    Merkel is in Philadelphia and is considered top drawer for Wegs.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Welcome to the forum Jade. I hope you are able to get your father some help quickly.
    ~ Bob

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    I live in Bucks County. I have been getting great care at the Philadelphia Vets Hospital where UPenn Rheumatology Fellow practice. Dr Merkel and Dr Sreih from the UPenn GPA Expertise center consult with my VA doctors. I know I am getting the finest care for GPA in the world. Dr Sreih told me that not only are they one of the 12 National Institute of Health GPA consortium hospitals but they are in charge of the entire "consortium".

    I just saw Dr Sreih a couple of days ago. I was very impressed.

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    I didn't know there was a NIH GPA consortium or particular hospitals associated with it. That is good to know, and makes me want to do some research on it. I'm glad you are getting such good care, XnCelt.
    Anne, dx'ed April 2011

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    See Granulomatosis With Polyangiitis (GPA)

    NIAID and other components of the National Institutes of Health support
    research on GPA and related forms of vasculitis at medical centers throughout
    the United States. For example, NIH supports the Vasculitis Clinical Research
    Consortium (VCRC), which facilitates clinical investigation in the inflammatory
    vasculitides, a group of disorders characterized by inflammation of blood
    vessels, including GPA.

    The VCRC includes the following clinical centers:

    1. Boston University School of Medicine, Massachusetts
    2. Ceders-Sinai Medical Center, Los Angeles, California
    3. Cleveland Clinic, Ohio
    4. Hospital for Special Surgery, New York, New York
    5. Mayo Clinic College of Medicine, Rochester, Minnesota
    6. Mt. Sinai Hospital, Toronto, Ontario
    7. St. Joseph’s Hospital, Hamilton, Ontario
    8. The University of Pennsylvania, Philadelphia
    9. The University of Pittsburgh, Pennsylvania
    10. The University of Utah, Salt Lake City
    11. The University of California, San Francisco

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