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    Posted January 22, 2014 by
    alisa2089
    Location
    Cumming, Georgia
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with Behcets disease

     
    I am living with a rare disease. I have behcets disease, a rare autoimmune disease that attacks the blood vessels anywhere in the body. This causes damage to any organ in the body, as blood vessels are everywhere. Common symptoms are genital and oral ulcers, skin lesions, eye issues and blindness, ulcers in the digestive track, and much more. For me it causes a lot of digestive distress as well as lung and brain issues. I started having symptoms at 15 years old, but I did not get diagnosed until I was 23. It was a very long and hard journey to get diagnosed. I went from specialist to specialist, doctor to doctor, test after test, and everything looked fine despite how awful I felt. I looked like a desperate girl with hypochondria, and the doctors lost their faith in me. My husband was a soldier when we got married, and we ended up moving to Germany where he was stationed. There a German doctor, who had spent a lot of time in Turkey, was able to diagnose me with Behcets. They had hospitalized me due to chest pain, saw my records and wanted to figure out why I was having so much trouble with my heath. They got a team of doctors together, and the rheumy figured it out. It was a wonderful day in December of 2012. Since then I have been trying different treatments to try to get into remission, but I have not found the right combination of medications yet to achieve my goal. It is hard because none of my doctors have actually heard of this disease. My rheumy here has (the same one that told me I was fine pre-Germany), but he is not sure on how to treat it. My other doctors google my disease when I come in. Rare diseases cause you to learn how important patience is! I feel very blessed that I was diagnosed, and I will never stop giving up in getting into remission! I will always be "Fighting Back"!

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