Behcet's resources for new members

[jzeis]

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

Book about Behcet's:

Behcet’s Disease: MyModernHealth FAQs (received 2015 National Health Information Merit Award, Patient Education): amzn.to/2j8HBmT

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

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.)

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

Discovery Health's "Mystery Diagnosis" episode about Behcet's (Joanne Zeis' 17-year search for a diagnosis):

Part 1: youtube.com/watch?v=22NHLG9...(Not working as expected?)

Part 2: youtube.com/watch?v=b62YET6...(Not working as expected?)

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...

Twitter feed: @jzeis

[Jaxxi]

Thanks, Joanne! What a pity, trying to play the videos in the UK brings up the message 'This video contains content from Endemol USA who has blocked it in your country on copyright grounds'. Sigh. What's the point of making documentaries then stopping people from seeing them?

[jzeis in reply to Jaxxi]

Hi Jaxxi -- that's a shame! I'd never heard of Endemol before, so I looked it up. I guess they bought the rights to the "Mystery Diagnosis" shows. Since my episode was broadcast about 12 years ago, I'm amazed anyone still cares about the copyright. As long as I don't try to make money off the youtube showings, though, no one seems to worry about it here in the US (I was the one -- not the show's original producers -- who uploaded a copy of the video to youtube years ago).

iTunes used to have the show available, but may have stopped. My "Mystery Diagnosis" episode was in the first season, under the name "Blood Brothers" (there were two stories in each hourlong episode, and this was the name of the first story. Mine was in the second 1/2 hour).