Stiff person syndrome is a neurological disease that only affects one in a million people. I am one of them. Even rarer, after nearly dying from my illness, I’m someone whose SPS is in remission, thanks to my doctors at Rush.
Stiff person syndrome gets its name from its chief symptoms, which are rigidity and/or spasticity of the skeletal muscles. The spasms result in unrelenting pain and typically disability. They even can cause broken bones.
The disease also can cause tremors, anxiety and a hyperexcitability of the muscles, known as the startle reflex. Emotional stress, a sudden, unexpected noise, or even a gentle touch may cause prolonged, often severe spasms or rigidity.
I began experiencing these symptoms in my early 30s. Because SPS is so rare, I suffered from the spasms and pain for five years without my illness being diagnosed.
On Mother’s Day of 2012, I woke up with severe, uncontrollable spasms, and my 18-year old son called an ambulance. My community hospital didn’t know what to do and was ready to send me to hospice when a friend of mine intervened and arranged for my transfer to Rush University Medical Center.