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I joined Inspire months ago and it has taken me this long to get up the courage to post. At first I was hopeful maybe I would find people who shared my sons condition-but then I became terrified that I would find people who did...
He now has a confirmed diagnosis of Steatocystoma Multiplex. He had his fourth surgery in less than a year last week. We have been unable to find a dermatologist who is even mildly supportive. Main while I have a 16 year old who spends his day with a visiting nurse packing wounds on his buttocks and groin.....