“Hello! I’m Angela Davis. I’ve suffered Stiff Person Syndrome symptoms since I nearly died at birth due to severe body-wide rigidity as well as leg and foot malformation.
Thanks to leg and foot braces during the first year of my life, I could walk but not run or walk quickly without falling on my face, my muscles stiffening, my struggle to breathe, and a sharp lingering jolt of pain in my body. My gait was abnormal when I stood. I leaned toward one side or the other.
My friends accused me of trying to herd them like a sheepdog when we walked side by side. I figured that was the way my body must function.
No doctor or specialist ever considered a rare disease diagnosis until I contracted the Epstein Barr virus in college. My SPS was triggered to debilitate my body aggressively.
I developed chronic anemia, bone fractures, muscle tears, and severe endometriosis as well.
I fought for a diagnosis when doctors said my virus was “supposed to be dormant” and my progressive intractable muscular rigidity, spasticity, seizures, falls, and acute pain was something else, though no doctor could offer a diagnosis. Most doctors remained indifferent.
It wasn’t until after I managed to graduate with honors from college and met my future husband in grad school that I searched the country for a specialist to diagnose me.
My parents and family did not want to hear about my medical odyssey. They abandoned me because of it. Not everyone enjoys unconditional family support in the SPS or rare disease world.
Thanks to my exceptional husband and donations from our friends, I was able to access a specialty neurologist at UCLA Neuromuscular Ctr who diagnosed a rare form of an incredibly rare disease, Stiff Person Syndrome.
After 23 years of diagnostic odyssey, I had my Atypical SPS diagnosis!
My SPS published articles are shared by The SPS Research Foundation and the House of Reps. Here’s to #HealthEquity for all rare patients around the globe!”
