Is there a forum for Behcet's Syndrome?

[aleyce]

I recently was diagnosed with this and would like to know more.  Can anyone give me direction?

[knightshotter]

Joanne Zeiss is the woman who has had the disease for 20 years and has co-written a number of books related to the disease. i have behcets. i'm on colchichine and plaquenil which keeps most of the constant mouth sores at bay. There are two behcets lists on yahoogroups. i think if you search on behcets; you will see both groups. She has 2 books which you can buy new or very inexpensively used on amazon and learn a great deal about the drug. it is rare. You will want a opthamologyst better neuro-opthamo to follow you because uveitis and scarring through not monitoring can be a real problem. Then you will often have a rheumatologist, specifically one that has a special interest in inflammatory arthritis would be best. Finally, over the years, i've found that a great skin doc who can biopsy a few sores to prove not herpetic can usually help. There aren't a lot of experts with behcets disease and for every expert, you'll find a team that will do everything to undiagnose you and leave you hanging. A good clinc in NY City; a great rheumatology dermatologist dr zorizzo can be really helpful since he is on the American Behcets Disease assn and much of the problems related to mS are a) finding meds to quite the sores and keep them calm and b) who is comfortable tereating the disease modifying aspecst of the disease. Some Behcets can tackle the neurological system (unlike my MS); Behets will rpimarily target the brain sterm, cerrebelum and so forth.  click on amazon to look at the behcets books available and click on the used listings and you can find some very good overview books authoried by zeiss available quite inexpensins.  many people are on things like remicade, humira, thalidomide, enbrel. At the moment, my MS doc doesn't believe i should also be on a rheumatic disease modifying med....Please email me off list if you'd like as well.

[BDer]

Hi,

There is a Yahoo support group that you can join and The American Behcet's Disease Association has a site http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521, there you will find links, a Behcet's Chat http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=1416735, where there are volunteer hosts and individuals chat on Wednesdays and Saturdays,  4 pm to 8 pm EST.
Hope this information helps you.

[civ05]

Hi,   A neuro recently thought my 27 year old daughter had Behcet's thou he had never see the disease before and had her eye symptoms wrong.  He was sending her to the Behcet's dept. at Mayo Clinic in Rochester.  You may want to look into it if you have insurance.  Also there is a blog on the internet from a woman who has lived with it for 20 years and actually had a tv show made of her story so you may want to find it and read it.  She has lived a very productive life.