I wanted to point out to Xandi that I spent 10 DAYS (not years) as a hospital inpatient in NIH's Behcet's Natural History Study (Washington D.C. / Bethesda) where I was evaluated by a team of doctors and tested almost to death. It was fascinating and of course, I was confirmed as having complete Behcet's Disease. You can Google the study to learn more about it.
I have gained knowledge about Behcet's through 25 years of study, reading, attending international conferences, writing, speaking/teaching, research, editing/reviewing Behcet's books, and interaction with hundreds of other patients and Behcet's specialists. It's been helpful that I have an advanced health degree so I can understand everything, but beyond that I'm mostly self-taught.
I have also represented Behcet's organizations at medical conferences worldwide and occasionally correspond directly with top BD researchers to clarify their conclusions. In 2010, I spoke at the Behcet's Patient Conference in London about the dangers of fungal infections for patients taking biologics (anti-TNF a drugs like Enbrel, Remicade, Humira, Cimzia, etc.). I also attended the ICBD physician presentations and talked with specialists at their London gatherings. In 2014, I will be attending the ICBD international conference in Paris, health allowing.
Before my Behcet's advanced to include neuro symptoms, I worked for a rheumatology nonprofit organization educating physicians, allied health professionals, and patients about arthritis, lupus, fibromyalgia, and disability issues. Prior to that I was a Naval Intelligence Officer, but was medically retired for Behcet's Disease.
Of course, since I have Behcet's myself and am on full disability, I'm in no position to answer everyone's personal questions or do research for them. (I only have so many spoons in a day too.) Much of the information is already out there and available by searching Google (including Google Scholar, Google Books, Google Images) and PubMed.
My best advice is to sort your search results by most recent because information is always changing and built upon previous research findings. Also, when searching, make sure to include alternative terms (e.g. aphthous, lesions, cutaneous, vasculitis, synovitis, cognitive, pulmonary etc.) to bring up articles that may use these words instead of more common ones.
If anyone's interested, you can read years of my posts by joining the Yahoo behcet-support online group and doing a search for what I've written (search for Lisa). I saw that there are over 2,500 posts with my name. I only started posting a few things with this group recently because there is so much need out there.
However, I encourage patients to Google their questions/topics, as well as do searches on the online support groups, before posting open or specific questions because almost everything has already been said or answered before. I understand that reading the research is difficult for non-medical people and that many terms are unfamiliar. But since we'll likely deal with this rare disease for many years, or a lifetime, it's worth becoming informed about our condition, medications, tests, and new research findings.
Best wishes to all