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

•Behcet’s Disease: MyModernHealth FAQs (book, received 2015 National Health Information Merit Award, Patient Education): 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

•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?)

•Twitter feed: @jzeis

[xandii]

Hi Joanne,

As usual you are a fountain of knowledge when it comes to Behcets.

I know when i was first looking for answers and i came across your name on the internet how comforting it was to get your reply to my rather desperate email and just how much you helped me through the fog we inevitably encounter with this condition.

I just wanted to say thanks for all those people who you have helped in the past and to commend you for the dedication you have towards helping others when they need it most.

It’s now more than 14 years ago for me and i can still remember every sleepless night i had and the reassurance you gave me.

Thank you so much from the bottom of my heart !

You are truly a friend in my hour of need.

Kindest regards,

Xandii xx

[jzeis in reply to xandii]

Aw, thanks so much Xandii -- I'm just glad I've been able to help

[Hidden]

Hi Jzeis I cannot open the videos from utube as they have been blockedbecause of our country is outside the usa

[jzeis in reply to Hidden]

Hi clocktower, I was hoping things had changed by now. The production company that holds the copyright for the show must still be blocking it for people outside the US, but I don't know why. The episode used to be for sale on itunes a while ago, but it looks like it's not there anymore either. Sometimes it shows up in reruns on TV in other countries, though -- the last place I heard about was in Brazil a few months ago. If I hear about it listed anywhere, I'll post it here.

Joanne

[Hidden in reply to jzeis]

Thank you Jzeis I will keep looking out for it