SPS support group in the UK
Here are two stories of people suffering from this disorder.
Woman Fights Rare Neurological Disorder 8/06
Woman fights rare neurological disorder
Aug 15, 2006 10:54 AM CDT
One woman is fighting back against an almost paralyzing illness: Stiff Person Syndrome. It's like this: you go to bed with a bad headache and wake up unable to talk or hardly move at all. That's what happened to a woman from New Jersey.
Takisha Sease, 26, is the perfect daughter, says her mother Marlyn. Former homecoming queen, prom beauty, caring friend and devoted mother to three-year-old Noell. But it is Marlyn playing the role of devoted mother now, because the daughter she loves so deeply is ill. Takisha has what's called stiff persons syndrome, a rare neurological disorder causing extreme muscle rigidity and spasms and a heightened sensitivity to noise.
"Sometimes just becoming anxious because something around you makes you nervous can trigger these spasms," said Dr. Josep Dalmau, neurologist.
Researchers don't know what causes the condition but they do know the auto immune disease is more common in women and African Americans. Treatments can help, but for Takisha even a tender touch can send her into spasms and heightened emotions.
"And my son, I can't even hold him," she said.
Her little boy tries to understand, to kiss her, to comfort her. Even though the Seases need money for Takisha's care, her mother says what she needs most is friendship and understanding.
"It is like everybody dropped off the face of the world," said Marlyn.
Takisha hopes the attention will lead to a cure. Her goal is a humble one. "I can walk one day and take my son to games and stuff," she said.
IV treatments, anti-anxiety drugs, muscle relaxants, and pain relievers all improve the symptoms of SPS, but will not cure the disorder. Research is being done to try and figure out what causes the disorder, which will hopefully lead to better treatments.
Utah News, 5/1999
Stiff Man's Syndrome
May 26, 1999
A Provo woman is suffering from an extremely rare disorder that causes the body to curl up and turn almost to stone.
It's called "Stiff Man's Syndrome." Doctor's don't know what causes it. And there's no known cure.
Science Specialist Ed Yeates has her remarkable story.
Lynn Zaritsky spends most of her time in a hospital bed.
"Without medication, I am completely rigid and stiff, and I go from being wrapped up into a tiny ball to arching backwards," she says.
Lynn has a disorder called Stiff Man's Syndrome which afflicts only a few hundred people worldwide.
For some unknown reason an antibody fires up her muscles all the time.
Instead of the body remaining fluid and mobile, it freezes up. The stiffness fluctuates from curling to arching backwards.
Lynn says, "It's painful in the sense that my joints are all being pulled out of place particularly when I arch backwards."
"And I go between the two until presumably death," she adds.
While her bizarre condition has attracted a lot of attention in medical circles, her attitude is even more remarkable.
With curled fingers, she still writes a disability advocacy column for the Salt Lake Tribune.
"If I lost all hope or all desire to be useful to society as a wife and mother and a disability advocate, I would have no reason to live," Lynn says.
The oldest known patient with Stiff Man's Syndrome lived 20 years. Lynn has had it 16 years.
Though time might be running out, her sense of humor remains strong - even for what she calls the mislabeled name, "Stiff Man."
"It's not terribly politically correct is it?" she laughs.
Though doctors didn't agree, they let Lynn out of the hospital temporarily for family graduations and birthdays.
For now, she's still home - on probation as she calls it.