My husband is 36 years old and in relatively good health. He was recently diagnosed (through biopsy results from his hands and feet) with dermatomyositis-scleroderma overlap. His hands are rough, and he has a couple of patches that come and go on his elbows, tops of his feet, knees and eyelids, although none of them are serious at this time and they are smooth normal skin most of the time. He also has joint pain, but nothing very serious yet. He was hospitalized last summer for bilateral pneumonitis last year and has pulmonary fibrosis. He is on oxygen at night and very little during the day (just during exertion). Otherwise, he functions on a fairly normal level. I did read your response to another person’s question that there is not a specialty clinic within Johns Hopkins that targets dermatomyositis. I also read, however, that someone with the DM-SCL overlap disease participated in one of the Johns Hopkins clinical trials (it was a scleroderma trial, I believe). If he could not participate in one of your clinical trials, please let me know if you suggest someone else in the field.
Since I last answered the question, Dr. Lisa Christopher now directs a Myositis Clinic at Hopkins. Dr. Frederick Wigley continues to direct the Scleroderma Center. Either might help with getting your husband into a clinical trial, but you might start with a consultation visit.