Last Update: December 20, 2022, 14:20 IST
The mother of one shared that she was now primarily home bound with no quality of life.
There is no cure for his condition, which could lead him to be wheelchair-bound or bed-bound for years to come.
Celine Dion postponed several Europe tour dates because she was recently diagnosed with Stiff Person Syndrome (SPS), a rare neurological disorder that doesn’t allow her to sing as she used to. Many of you may have heard this for the first time as this condition is so rare that it occurs in one in a million. But Karen Long is familiar with the debilitating symptoms and has lived with SPS for the past 12 years.
A 52-year-old woman from Southampton can no longer cross the street for fear she could turn into a human statue as her excruciating cramps cause her muscles to lock up, causing her to collapse, the Mirror reported.
The mother of one shared that she was now primarily home bound with no quality of life. Twelve years ago, Karen began experiencing back pain and began to hunch over and become like a walking robot. Her husband died in 2013, which came as a great shock to Karen.
Three years later, she experienced a bad episode when she was on her way home with her new partner. She now thinks the stress of the move combined with her husband’s death may have triggered her SPS.
She shared that even if her door buzzer is being pressed she gets a startle reflex and hits and has convulsions. Her 18-year-old son has left for university this September and Karen is living in the ground floor flat and is deemed unfit to work. To pass her time, she does beauty blogging and talks about her invisible illness online.
SPS has also affected her relationship with her partner, who has been with her since her diagnosis and accompanies her to consultations and drives her to hospital appointments. Karen said that if he didn’t hear from her by 10 every morning, he would think she had fallen.
There is no cure for her condition, which could leave her wheelchair-bound or bedbound for years to come. She hopes strangers will understand more about people with invisible disabilities and that further research may lead to a cure.
“My heart goes out to Céline because I know how awful it is, however I have received the number of messages of support…all of a sudden there has been an increased awareness. It takes a long time to get diagnosed and the hardest part is That it can’t be fixed. He’s there for life like the rest of us,” she said.
Karen takes daily muscle relaxants and has intravenous immune globulin (IVIG) treatment every four weeks on the NHS.
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