
My Disease Affects One in a Million – This Is What It’s Like Trying to Get Treated
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.