04/11/2018

After a twenty-year medical odyssey fraught with misdiagnoses and medical neglect, my mobility progressively deteriorated with body-wide, intractable muscular rigidity, seizing, spasming and acute pain. My husband and I fought to be referred to UCLA Neuromuscular Clinic, where I finally was diagnosed with Stiff-person syndrome (SPS), a rare neuromuscular disease that affects one in a million people. There is no cure, aside from some miracles with the financially exclusive stem cell transplant.

03/12/2018

A current concise article on clinical criteria and treatment options for Stiff Person Syndrome. Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients

01/28/2018

...Stiff person syndrome is truly a “one in a million” disease, explains Newsome. Because of this extremely rare incidence, he adds, clinicians know little about the best ways to treat it. That’s why he and his colleagues recently decided to launch a center for this disease within Johns Hopkins—which sees more patients with this disease than any other medical institution in the world—to both treat patients and to study them with the goal of developing better treatments in the future.... The