Re: Shulman's research or support forums?
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:: What is Shulman's syndrome? :: :: : Shulman's Syndrome, name for Dr. Lawrence Shulman, is also called : eosinophilic fasciitis. It is characterized by tenderness and : swelling of the extremities caused by inflammation of the : muscles and the connective tissue immediately beneath the skin, : resulting in decreased flexibility of the limbs. Shulman's : syndrome occurs sporadically and its cause is unknown. Any age : group may be affected, but most people are between 30 and 60 : years old. : I am seeking information regarding any research that may be ongoing for Shulman's Syndrome / Eosinophilic Fasciitis. I understand it is very rare and I'm trying to hook up with others with this diagnosis to find out what has been tried, what's worked and what's being studied. |
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I am not aware of any support groups and there is very little research published on this topic. As you know, Hopkins claims Dr. Shulman as one of their own, before he became head of what is now the National Institute of Arthritis and Musculoskeletal Diseases (NIAMS) at the NIH. It is rare disease making it difficult to study and many patients do well on prednisone therapy. Dr. Fred Wigley at Hopkins probably has the most experience and is the most knowledgeable about this topic. You might schedule a consultation. |
Last update: 06:59 PM Tuesday, April 10, 2007
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Alan Matsumoto, M.D.
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