Karen Long, 52, from Southampton, has strict person syndrome, just like the famous singer Celine Dion. Speaking to Mirror, Karen shared her fears by explaining that this disease has affected her whole life. People with rigid person syndrome cannot move by transforming into sculptures. For this reason, Karen, who was afraid that something would happen to her while going out, said that she had difficulty even crossing the street.
DECLINES IN QUALITY OF LIFE
Strict person syndrome Karen battles with bruises that often extend from her knees to her ankles. While going shopping, Karen became unable to walk and had to ask strangers to take her back to her car. Karen, a mother of one, says she is now mostly confined to the home and lacks quality of life.
His body freezes and falls
“I have augmented stimulus – so if someone makes you jump, you go into a spasm mode, I live right in it,” Karen tells Mirror.
“If someone outside honked I would have fallen. With SPS you fall like a statue, you have no chance and your body freezes, you fall straight down. I can’t go through an open area so I can’t cross the road.
THIS DISEASE IS A RARE NEUROLOGICAL DISORDER
“If I have to go somewhere, I’ll take the longest route, so I’m next to a wall because you’re physically stepping in and the antibodies in your body are saying no.” The rare disease, which affects approximately one in a million people, is a rare neurological disorder with features of an autoimmune disease.
IT STARTED FIRST WITH BACK PAIN
This disease, which can be seen mainly in women over the age of 30, sees a part of their own body as foreign and begins to destroy it.
Twelve years ago, Karen started experiencing back pain and started walking with her hunchback, and her gait became robotic. Five years later, he was diagnosed with incidentally occurring SPS.
STRESS MAY HAVE TRIGGERED THE DISEASE
Her husband died in 2013 and it came as a big shock to Karen. Three years later, while moving house with her new partner, she had a particularly nasty incident where she thought her nerves were trapped. Looking back, she thinks that the stress of moving, coupled with the loss of her husband, may have triggered SPS – a condition believed to be inherited, but no genetic defect has been identified to cause it.
THE DISEASE HAS NO TREATMENT
Karen was suffering from excruciating pain in her torso area so she was rushed to the hospital. He was diagnosed with the disease by chance tests. “The definition was pure luck, I was very lucky,” Karen said. While there is no cure, Karen takes daily muscle relaxants and is on Intravenous immune globulin (IVIG) therapy, in which someone else’s antibodies are implanted every four weeks.
EVEN A DOORBELL CAN CAUSE SPASM
Simple tasks that people take for granted, such as wearing socks, shoes, and even cooking, are severely affected with this syndrome. Karen may be sitting on the couch watching TV and not be able to get up suddenly. But she learned the feeling when a part is about to strike. “Even pressing the doorbell hits my startle reflex and I have a spasm,” Karen continues.
“WE DON’T HAVE A LIFE”
Karen has been living alone in a ground-floor apartment since her 18-year-old son left home to go to college in September and seems unable to work. She writes beauty blogs to pass the time and speaks openly about her invisible illness online. “We don’t have a life. Sometimes we go out for lunch, very rarely, but leaving the house is very stressful, but I’m trying.”
CAN BE CONTACTED IN A WHEELCHAIR
“This is what has an invisible disease. People see me doing makeup online, they don’t think there’s something wrong with me. What they don’t see is that it’s a cover.” It’s a progressive disease with no cure, so Karen may be confined to a wheelchair or even bed. However, she is doing her best to become a normal mother to her son, who is studying at Brighton University, and she tries not to let the disease define her.