As she learns more about the uncommon condition and how it affects her life, Céline Dion shared in an emotional Instagram video on Thursday morning that she has been diagnosed with Stiff-Person Syndrome, forcing her to postpone and reschedule a number of future concert dates.
According to the Stiff Person Syndrome Foundation, stiffness, crippling pain, chronic anxiety, and muscle spasms “so violent they can dislocate joints and even break bones” are some of the symptoms of this uncommon and incurable neurological disease that affects the brain and spinal cord.
Only one out of every million persons has received a diagnosis. Maureen Materna is one of them. She was diagnosed with the disease in 2011, and the 74-year-old Ohio resident spoke to PEOPLE about living with it.
“It’s a horrible disease,” she says. “Maybe now with Celine Dion getting this, maybe they’ll do more research because I really don’t think they’ve done too much research because it’s so rare. One out of a million people have it. When I go to a doctor, they’ll say, ‘What the heck is Stiff Person Syndrome? I never even heard of it.'”
Materna first noticed significant leg, back, and foot discomfort when she was 64. She remembers having 45-minute-long foot cramps on a regular basis.
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She has always been active and worked out, so she immediately rushed to the emergency department when the pain continued. All tests, meanwhile, came back negative, and Materna appeared to be in excellent physical condition. Before she received an answer, two years and multiple doctors were required.
“I probably went to 20 different doctors, foot doctors, chiropractors, rheumatologists, neurologists, back doctors. Nobody knew anything,” she explains. “They said I had a parasite or they would just come out and say there’s nothing wrong with you, you’re fine.”
It makes me frustrated. It’s quite annoying,” Materna continues. What in the world am I going to do, is all I can think of. Materna went to the Cleveland Clinic and was diagnosed with Stiff Person Syndrome in 2011.
She claims that managing the ailment has been very challenging and that the pain, particularly in her feet, is frequently incapacitating.
“I’m in agony all the time, so it’s difficult. My nerves simply go berserk with anything I do,” she says. For nine years, I couldn’t even wear shoes. My feet hurt and were sore. It seems like I’m walking on shattered glass as I move.
“My life is not the same,” Materna tells PEOPLE, noting that she’s no longer independent and can’t do the things she loves anymore.
“I have grandchildren in Chicago and I can’t visit them. Or even when they come here, my husband’s gonna take them to see a play and I can’t go and sit there. Even when I watch TV at night, I have to get up during all the commercials and move around or I stiffen up like crazy.”
Since Stiff Person Syndrome is incurable, treatment focuses on symptom management, mobility enhancement, and comfort. Doctors tried numerous treatments for Materna’s symptoms but gave up when they led to blood clots and migraines.
She also attempted physical therapy, biofeedback, neurofeedback, acupuncture, and acupressure to treat her discomfort. Only taking Valium and maintaining as much health and activity as she can today allows her to control the spasms and agony.
“You just have no choice. Either lay down and die or fight it and I want to fight it,” Materna says. “I just keep that positive attitude. If I have a negative thought I try to think of two positive things to be grateful for. I handle it that way.”
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