My 16 year old son was recently diagnosed with Steatocystoma Multiplex Suppurative. He has an atypical disease that is behaving atypically. Lucky us! The majority of his cysts have been in the perianal area. he has had numerous surgeries as these cysts rupyure easily and destroy the surrounding skin. Currently he has two large slow healing wounds on the inside of both butt cheeks. Yesterday he found a huge one (silver dollar size) in his groin. We are now facing his 5th surgery in less than a year. We live in Michigan and have been seen at the U of M. We have been less then pleased with his care at this point. I guess I am finding it difficult to believe or accept that there is NO treatment and NO one who can help us. we are willing to go ANYwhere. Suggestions???
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