Best Advice for Support

[H4Emily]

Hi, I have a close friend with Bechet's and I was hoping to get advice on how to best support and encourage her. She has had a rough time, not just with the disease but also with doctors who are inexperienced in the disease itself. We don't live close to each other but sometimes she visits me for a week or two. Do any of you have suggestions on how to best support someone with this disease?

[jzeis]

Your friend is lucky to have you! Where does she live? I can try to find the name of a specialist who can help.

In the meantime, here's some other info I've put together:

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:

•American Behcet's Disease Association: behcets.com

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

•Table of Contents and order info for latest book on Behcet's (2015 National Health Information Merit Award, Patient Education): bit.ly/1VPAhZU

•Other Behcet’s books by J. Zeis: bdbooks.info

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

•Behcet's Syndrome Centres of Excellence (UK): behcets.nhs.uk

•The Behcet's Treatment Center in the US (New York City) has become part of the Seligman Center for Advanced Therapeutics at 246 E 20th Street:

med.nyu.edu/medicine/rheuma...

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

•Behcets Disease Books and Resources (J Zeis): behcetsdisease.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...

•A list of Behcet's organizations (worldwide): behcetsdisease.com/links.html

•Twitter feed: @jzeis

[H4Emily in reply to jzeis]

Thanks for all the information! My friend lives in Alabama. Is there a good support group that you would recommend for her? I found one or two here and there but it didn't look like many people actually participated. (Which is how I found myself here on this site.)