My name is Tracey and 13 years ago Behcet’s Disease came into my life. Behçet’s disease (BEH-chets), sometimes called Behçet’s syndrome, Morbus Behçet, or Silk Road disease, is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies’ own tissues. The exact cause of Behcet’s Disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction.
Since my diagnosis of Behcet’s, I have been fighting Behcet’s head on but not just for myself. My son Joshua, who thankfully does not suffer near as much as I, was also diagnosed with Behcet’s Disease. My fight began when I thought I would do a good thing for myself, made a lifestyle change and quit smoking. Little did I know that quitting smoking was going to change my life completely.
Since I no longer had nicotine in my system suppressing my symptoms, the Behcet’s attacked my body with force. It took me two years, hundreds of hours doing research on the computer, an escape from death, and what seemed like thousands of doctor visits before finally getting a diagnosis. I was happy to know I wasn’t going crazy.Although I was told there is no cure, I am content knowing there is something really wrong with me.
Editor’s Note: American Behcet’s Disease Association (ABDA) is a terrific resource for support and education. Recently, the ABDA partnered with CoRDS, the Coordination of Rare Disease Registry. CoRDS, located at Sanford Research in Sioux Falls, SD, focuses on rare disease research with the purpose of establishing a central registry of individuals with confirmed diagnoses of every rare disease.