I wanted to make a quick post before I head to bed. In the midst of all the craziness today, I never had a moment to acknowledge that today, March 15, 2017, is Stiff Person Syndrome Awareness Day. While this was my working diagnosis at one point, I wanted to write this and share a little bit of information, as I have quite a few friends that have this extremely painful and debilitating one-in-a-million condition.
Stiff Person Syndrome (SPS) is a neurological disorder with characteristics of an autoimmune disorder. The biggest symptom is stiffness/rigidity/spasticity/spasm of muscles, which is painful and potentially hard to treat and in 60% of patients, the antibody GAD65 in the blood. Some may also have GAD65 and other antibodies in their CSF (that's spinal fluid for all the non-medical people) as well. Getting a diagnosis takes an average of 7 years, misdiagnoses, and countless doctors, which as you might imagine, is incredibly frustrating. Even then, treatment is far from easy. Many people respond to high doses of diazepam (Valium), but other common treatments include: IVIG, plasmapheresis, intrathecal Baclofen therapy, immunosuppressants like rituximab, and chemotherapy agents like cytoxan. Stem cell transplants are still in trial phases in hopes of treating and maybe even one day, curing this condition.
Join me in supporting these warrior "zebras" on the 3rd Annual Stiff Person Syndrome Awareness Day!