Maritime woman shares details of her struggle with stiff person syndrome
One of the most successful singers of all time has exited the music stage.
Céline Dion, the award-winning singer best-known for her hit “My Heart Will Go On,” has gone public with her diagnosis of stiff person syndrome, which impacts one in every one million people.
Linda Cox heard the news last night.
“When they listed her symptoms, they listed mine,” said Cox from her home in Bear River, N.S.
Cox went home sick from work 25 years ago with stiffness in her right leg. It took four years before she was diagnosed with stiff person syndrome.
Stiff person syndrome affects the brain and spinal cord and it can be triggered by loud sounds and bright lights.
“Spasms can get so bad they can break your bones --- a balloon bursting or a car horn blowing,” said Cox. “When I would go to outpatients, if the lady was going to vacuum, she would come tell me so I wouldn’t be startled when she turned it on.”
Those with stiff person syndrome live in fear of spasms.
“As a result, if they are walking across an open area, even though they may seem normally able to walk, if they hear a sound, the person may freeze up, fall over and hurt themselves,” said Dr. Andrew McKeon from the Mayo Clinic.
Cox has been forced to use a cane and sometimes a walker.
“I am scared to leave the house, to go outdoors,” said Cox. “I start to get tense.”
According to her son, Nick, the diagnosis has impacted his family's lifestyle.
“She was a very hands-on volunteer, always driving us to sports and band,” he said. “And then all of a sudden, it stopped. Someone who was always out in the community doing stuff for her boys couldn’t leave the house and was afraid to leave the house.”
Cox was saddened by the Céline Dion diagnosis. However, because of Dion’s fame, she said there is a possible upside to this recent diagnosis.
“I haven’t come across anyone who has heard of it,” said Cox. “Now people are going to hear of it.”
And that could lead to awareness, fundraising and maybe a cure.
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