What causes Behcet's, and how will it affect
my family and my life?
There is no known cause for Behçet's disease, although some people suspect that an environmental element, an unknown virus, or perhaps a bacterial infection may trigger the disease in people who already have a genetic predisposition for Behcet’s. While there is no cure for BD at the present time, there are many medications available to help with the various symptoms.
Behçet's isn’t contagious. While it’s possible that someone you know may show some of your same symptoms, their symptoms may be caused by a medical problem totally unrelated to BD.
There is no way to predict whether any of your family members will eventually develop Behcet’s. This includes any children you may have, now or in the future. Autoimmune diseases of all sorts can run in families, though, so you might find that while you have Behcet’s, you may have a couple of other relatives with diseases like lupus or ulcerative colitis instead.
Some newly-diagnosed people are worried because they think that having Behçet's means they can no longer have a normal life. Granted, your life may now be different from what it was, but many patients are still able to carry on with family, friends and work -- just at a reduced level, depending on their symptoms.
Behçet's is a chronic, unpredictable disease, and there’s no definite progression of symptoms. It often causes your immune system to be overactive, so check with your doctor before taking any herbal remedy (such as echinacea) to boost your immune system, because it may make your symptoms worse.
Keep in mind that some people never develop serious eye disease or have nervous system involvement. For most patients, Behçet's is a long-term, cyclical disease that comes and goes in “flares” of varying intensities. You may have symptom-free periods of weeks or months that are interrupted by flares that can last a few days, weeks, or months. You may have awful symptoms right now, and find that you have different (or many less) symptoms during the next flare. Some people may be hospitalized at times with the more serious complications of BD, but there are also occasional reports of people who go into permanent remission. As you can see, it’s all very uncertain. The only constant is that most Behçet's patients deal with some level of symptoms for their entire lives.
At the present time, there is no way to predict which patients will move on to more serious problems, which ones will remain stable, and which ones might go into remission.
Learn to listen to your body, and recognize the signs of an oncoming flare. If you start to feel ill, slow down your activity level if possible, and be kind to yourself when making plans. Realize that emotional and physical stress sets off flares in many patients. It may not matter whether the stress is bad (a death in the family) or good (getting married) -- it may still have the same overall effect on your health. Some patients report that severe cold or high heat and humidity can initiate health problems, or that certain seasons are more difficult on their bodies than other times of the year. Women may notice an increase in their symptoms immediately before or during their periods.
Whether or not to have children is a highly personal issue for each couple when one partner has Behçet's disease. Couples justifiably wonder if their child(ren) will eventually develop BD. Just as in the general population, though, any of your children may grow up strong and healthy, or they may have a tendency towards illness of some sort -- and that illness may or may not be Behçet's. At the present time, there is no way to predict the final outcome.
There may also be natural concerns about how the stress of pregnancy will affect a woman's illness. Some women report that their symptoms stop completely during their pregnancies, while other women are plagued by an increase in their BD-related problems. Any woman considering pregnancy should thoroughly discuss her concerns with her health care practitioner in advance -- including which of her medications she may or may not continue to take during her pregnancy. [I conducted a survey in 2006 of pregnancy in U.S. women with Behcet's disease, and the results were presented at the International Conference on Behcet's Disease in Portugal in Sept 2006. Results may be seen at my two "Essential Behcet's" blog posts on pregnancy and BD:
Because so few people have Behcet’s, it’s common to feel alone in your problems. Not many people are able to relate to your health issues because they’re so rare. You may find that you have difficulties with the significant people in your life because they can’t understand what’s wrong with you -- after all, you look “healthy” most of the time. Of course, most of the problems caused by Behçet's inflammations are internal, so they’re not immediately apparent to your friends and family. It’s common to have days when you feel ill, but look fine on the outside.
If you find yourself becoming depressed by your health issues or worried about your future, please seek out a counselor or therapist who will listen and help. In addition, there are Behçet's support groups available on the internet, with members who are dealing with the very same issues that you face on a daily basis. A list of available support groups appears on the Behçet's Links page.
The American Behçet's Disease Association (PO Box 869, Smithtown, NY 11787-0869; hotline at 800-723-4238) publishes a newsletter for ABDA members and has an informational website at www.behcets.com that you might find helpful. The ABDA also provides a Doctor Registry with names/locations of physicians familiar with treating BD in the U.S. The most recent ABDA Patient & Medical Conference took place in Orlando in April 2010, and featured presentations and question/answer sessions run by physicians familiar with Behçet's disease. There were also formal and informal patient and family discussion groups throughout the weekend. In addition to the Conference, the ABDA sponsors a "Behcet's Walk" fundraiser for patients, families and loved ones every 2-3 years. The next Walk is scheduled for Long Island (NY) in September 2011.
The Fourteenth International Patients' and Medical Conference on Behcet's Disease took place in London in July 2010.
More basic information about Behcet's disease:
What is Behcet's disease?
How is Behcet's diagnosed? (including International Classification Criteria of 1989)
Other symptoms related to Behcet's
What is it like after 30 years of symptoms?
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Copyright 2009 Joanne Zeis