BEHCET'S RESOURCES FOR NEW MEMBERS

[jzeis]

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

Table of Contents for latest book on Behcet's (winner of 2015 National Health Information Merit Award, Patient Education): bit.ly/1vgpeNM

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 and bdbooks.info

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

[nurse_ratchet]

Thanks Joanne! You're always a wealth of knowledge I did buy one of the blue hard cover books Guide to BD and Treatment- edited by both dr's Yacizi. It's mainly for health care prof, no layman's lingo in there! Being a nurse it helped me better wrap my head around the A and P of this disease. I should pass it on to my doctors!

It's great that you put out those links. I'm sure info can change fr time to time as well. It's been since 2012 that I've been in this flare that we just can't seem to fan out :/ I am greatful that I am not to the point of requiring hospitalization, etc. There are people way worse off than I! I just want to feel 'normal' enough to know that going to work is a doable thing. Have been off x 2 yrs + now.....prior to that things were very manageable for past 10 yrs.

I'm am lucky to have great dr's looking after me

Do you know anything about Simponi? Biological monthly injection, that I've been on since end March. Prior to that, Enbrel for almost 2 yrs. I'm also on colchicine and plaquenil, prednisone prn. Anything new out there besides Remicade? We want to keep that one for last resort or if things get worse (organ involvement etc).

Any thoughts are appreciated!

Have a great day 😆

Gen