What is it like after 30 years of symptoms?
Because every person is different, not every patient will display the same symptoms or disease progression. After 30 years, some people may find that their symptoms have lessened, and that some problems have disappeared entirely. For other people, their health issues may have become physically or emotionally disabling. My 30-year history is a little better than average in terms of symptoms and complications. I’ve rarely had the overwhelming fatigue or severe headaches experienced by many other patients. I still have good vision, although constant eye inflammation during the first 10 years took its toll: There has been short-term blindness in one eye due to a vitreous hemorrhage, right-sided blindness from a cataract [corrected through successful cataract surgery], and now slightly distorted vision in both eyes from various retinal complications. Vision-related procedures have included cryosurgery, laser surgeries, cataract surgery in both eyes, and an IOL implantation in each eye. In spite of these problems, exceptional medical treatment has brought my vision back to 20/30. If you need to find an eye specialist experienced in treating the visual complications of Behcet's, such as uveitis and retinal vasculitis, please refer to the following list:
http://uveitis.org/patient/specialists/default.html
My mouth ulcers used to appear in crops of up to 100 at a time, although colchicine reduced the outbreaks significantly. There has been minor neurological involvement, but no permanent impairment in my movement or speech. There has also been occasionally severe joint pain, peripheral neuropathy (tingling, pain and numbness in hands and feet), skin lesions and genital sores.
However, I'm a married mother of two healthy children and I work full-time as a medical writer. I realize that not everyone is able to maintain my level of activity, but I like to think that it keeps the focus on my life, instead of on my disease.
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 causes Behcet's, and how will it affect my family and my life?
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Copyright 2009 Joanne Zeis