My sister has been diagnosed with "Erythema elevatum diutinum" (EED). The doctors don't have a lot of information on it... she's looking for someone that may also have EED or know of a cure... I feel so helpless... The doctors give her Dapsone for it, however, that effects the liver and she also has Hep C. She would love support in talking to someone that shares EED.
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I have been diagnosed with this disease. I've had it for about 8 or 9 years, although just diagnosed in the last three years. I was on prednisone for several years and am now on Dapsone for the last three years. I'm in a major flare up presently. ugg.. very unsightly and painful. My lesions are primarily on my feet. Fortunately I live in Arizona, so flip flops are in order! I sometimes get the growths on my elbows or knees. I would love to discuss your sister's condition with her. There are so few of us with this disease. Vicki
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I have been diagnosed with EED for 3 years and still have not found anything that helps ( except steroids) which I can only take for a short time then I rebound. They have never been able to find the underlining condition that may cause or contribute to it. I have tried many medicines. I'm on Dapsone now but this is my 2nd time and it is not helping. I have it on soles, top and now on ankles of feet. They are very painful about 80% of the time. Maybe someone else can share their story and give me I sight on what may have helped them.
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