Living with Stiff Person Syndrome: 'I'm a statue for your lawn'

Story highlights

  • Stiff Person Syndrome is a rare disorder that causes painful muscle spasms and stiffness
  • Experts estimate one in every 1 million people has SPS
  • Stem cell transplantation may successfully treat this debilitating disease
Laura Kassem had tripped before. But this time, she fell hard. She couldn't seem to control her body as she went down, even to protect her face from hitting the concrete sidewalk.
It happened again the next day as she stepped off an escalator. Then again in the parking garage on Monday when she went to work.
"I had no idea what was going on," the 33-year-old remembers. "I had no idea why I would just drop all of a sudden."
The third time, she went to the emergency room, where a neurologist ordered an MRI and a cardiologist performed a tilt test -- normally done on patients who faint because of a sudden drop in blood pressure.
The tests revealed nothing. Doctors sent Kassem home with instructions to drink more water.
Kassem continued to trip over nothing. So she went to the Cleveland Clinic, where she says her symptoms "baffled" doctors in the rheumatology, cardiology and neurology departments.
Back home in Sylvania, Ohio, a suburb of Toledo, Kassem made an appointment with an orthopedic surgeon to address the extreme pain in her hips and lower back. He sent her to a neurosurgeon, who in turn sent her to see a neurologist who specialized in neuromuscular disorders.
Meanwhile, Kassem tried to avoid open spaces. She hugged walls so that if her body froze up, she wouldn't fall flat on her face. She already had a few loose teeth, and her nose was a mix of blue and purple.
One night, Kassem and her sister were watching "20/20" when the woman being interviewed began describing Kassem's symptoms. The woman had been diagnosed with Stiff Person Syndrome, or SPS, a rare neurological disorder characterized by painful muscle spasms and progressive stiffness in the lower back and limbs.
Could that be it? the Kassems asked themselves. They had never heard of SPS. But Kassem's latest neurologist thought they could be right. While waiting for the test results, he put Kassem on benzodiazepine, a medication that is known to lessen the symptoms of SPS.