Behcet's resources for new members

[jzeis]

It looks like we've got a lot of new members since the last time I posted this list! Welcome to everybody, and I hope this list is helpful.

BEHCET'S RESOURCES from Joanne Zeis

I've had Behcet's for 35+ years and have been helping other BDers since 1996 through online support groups, websites, books, and other resources. Here are some reliable sources of info for people in the US, UK and other countries:

•Behcet's Syndrome Society (UK): behcets.org.uk

•American Behcet's Disease Association: behcets.com

•Behcet’s Disease: MyModernHealth FAQs (book, received 2015 National Health Information Merit Award, Patient Education. Available in Kindle and paperback editions through amazon around the world, or as a special order at any local bookstore): amzn.to/2j8HBmT

•Behcet's Syndrome Society Fact Sheets for patients: behcets.org.uk/information-...

•Behcet's Syndrome Centres of Excellence (U.K.):

London - behcets.org.uk/?page_id=409

Liverpool - behcets.org.uk/?page_id=414

Birmingham - behcets.org.uk/?page_id=411

•The Behcet's Treatment Center in the US (New York City) has become part of the Seligman Center for Advanced Therapeutics at: 333 East 38th Street, NYC

nyulangone.org/locations/be...

(Even though Dr. Yazici is listed as accepting new patients, there’s some confusion about whether he’s actually doing research full-time instead of seeing patients. Call the Center to verify.)

•Find a vasculitis specialist (worldwide): vasculitisfoundation.org/ma...

•Find a rheumatologist (worldwide): rheumatology.org/Directorie...

•Find a uveitis specialist (worldwide): uveitis.org/patients/list-o...

•Uveitis.org patient education booklets/articles: uveitis.org/patients/educat...

•All three Behcet’s books by Joanne Zeis: amzn.to/2m8sZlO

•Essential Behcet's -- a searchable blog (J Zeis): essentialbehcets.com

•Twitter feed: @jzeis

[Ashveer]

Hi Joanne, thanks so much for all your great answers to my questions that doctors don't have time for. I contacted Dr. Yazicizi' new york clinic assistant and she told me he is not accepting new patients, a few months ago, but that I could fax the consult and have a look at it...at that time, I was wondering if it also good to make a visit to Turkey - Cerrapassha Hospital; I wonder if you could tell us more about how we can visit his Father's Rheumatology Clinic as well - that is helpful in future as well. We are for sure wanting to visit Liverpool....and Joanne, I have to say again, the doctors we see do not explain to us how for example Retinal Vein Occlusion actually happened/caused of it in B.D. I read that it is caused by repeated uveitis, athrescrelosis - all I know is that Dr. Mathen here told us that Ashveer has Arteritis, a vascular tubular disease at the time few months ago - well now we know the hard say it was B.D. He did look for Retinal Vasculitis, and was told he did not have retinal vasculitis, his blood analysis by Hematologist all was normal in clotting except anemia slilghtly with neutrophils rise...if anyone or Joanne you have the time to answer this that is great, I understand everyone is busy...but I thought I post this incase anyone has similar situation with eye involvement....thank you again Joanne, for your kindest help to help me understand B.D. better than doctors!!

[Colleen6082]

Thank you Joanne! Awesome resources!

[Blearyeyed]

What a brilliant and valuable list.

Thank you for posting it again.

As time goes on it may be a go to tool for getting the help I need