Hello, In this diagnosis which is very uncommon, the mainstay of treatment is surgical mainly and afterwards intensive physical therapy. Here, the contractures of the muscles and as a result the damage to the joints themselves can only show improvement with very regular range of motion testing and at times surgical intervention. Some physicians have opted to even surgically cut some of the contracted muscles in order to preserve remaining joint mobility. I have not seen a specific case of this however I have had numerous patient with similar contracture diseases. Long-lasting mobility and improvement was seen in patients with regular muscle and limb therapy. Take care. Hope I have answered your question. Let me know if I can assist you further. Regards, Dr. David Girardi, Internal Medicine Specialist