After revealing she had Stiff Person Syndrome in a public statement, Celine Dion brought attention to a condition that few had heard of before. The Canadian singer has an extremely uncommon disease that affects just “one in a million” individuals worldwide.
What then are the signs and consequences of Stiff Person Syndrome? Here is a complete rundown of the unique illness:
Celine Dion Illness Update
Céline Dion Sister said that Celine is doing better and is making progress in her fight against Stiff Person Syndrome. Claudette Dion told Hello! Canada magazine that her sister is “doing everything to recover,” and that the family is “crossing our fingers that researchers will find a remedy for this awful illness.”
Dion announced in December 2022 that she had been diagnosed with Stiff-Person, a rare neurological illness. Her spasms were finally explained in an emotional video she posted to Instagram.
“While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said.
Muscle stiffness and painful spasms are the most prominent symptoms of Stiff Person Syndrome, a rare, degenerative neurological condition.
“It’s an illness we know so little about,” Claudette said of Dion’s symptoms. “There are spasms — they’re impossible to control. You know [how] people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles,” she says, dismayed. “There’s little we can do to support her, to alleviate her pain.”
In her December post, the “My Heart Will Go On” singer admitted that she has been “dealing with problems with my health for a long time,” and that, “Unfortunately, the spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
After the diagnosis, Dion canceled the European and British dates of her Courage World Tour. In May, she announced that all of the tour dates through 2023 and 2024 had been canceled.
what exactly is the cause of the stiff person syndrome?
muscular stiffness and spasms, hypersensitivity to stimuli like sound and light, and mental disturbance that may produce muscular spasms are all hallmarks of stiff person syndrome, as described by the National Institute of Neurological Disorders and Stroke.
The National Institute of Neurological Disorders and Stroke warned that those with the disorder may stoop over time. According to the Cleveland Clinic, the symptoms often start in the trunk and abdomen and progress to include leg stiffness and other muscular spasms.
There may be “quite severe” muscular spasms. Dr. Emile Sami Moukheiber of Johns Hopkins Medicine’s Stiff Person Syndrome Center warned that these may lead to accidents, agonizing discomfort, and substantial impairment. “Severe spasms are a leading cause of accidental falls. Surprise, intense emotions, or very low temperatures may all trigger these spasms.
Because these spasms may be so powerful, a simple fall can result in a broken bone.
In a video posted to Instagram in December, Dion explained how spasms impact “every aspect” of her life, including “sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.” I’m sorry to have to break this to you today.
Anxiety is another symptom of the illness. Dr. Scott Newsome, director of the Stiff Person Syndrome Center, was quoted in a video posted on the center’s website as saying, “Many patients, if not all, have an anxiety that is intrinsic to the disease and that anxiety actually feeds on the physical ailments of the disease that people can have.”
The National Institute of Neurological Disorders and Stroke observed that “street noises, such as the sound of a car horn, can trigger spasms and falls,” making some persons with stiff person syndrome reluctant to leave their homes.
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Why Do People Become Stiff?
The National Institute of Neurological Disorders and Stroke suggests that rigidity in the limbs is the result of an autoimmune disorder in people with stiff person syndrome. According to the article, “it is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anemia.”
The institute suggests that an immunological reaction “gone awry” in the brain and spinal cord may be to blame, albeit this is still just speculation.
The institution said on its website that those with SPS had “increased levels of GAD,” an antibody that acts against an enzyme involved in the manufacture of an essential neurotransmitter in the brain. “A blood test measuring the level of glutamic acid decarboxylase (GAD) antibodies can provide a definitive diagnosis.”
An electromyography (EMG) detects electrical activity in the muscles, and a lumbar puncture, sometimes known as a spinal tap, is another diagnostic procedure. People generally go to doctors specializing in chronic pain rather than neurologists because of the disease’s rarity and the lack of clarity in its symptoms.
According to the NINDS, phobias are often misdiagnosed as anxiety, fibromyalgia, multiple sclerosis, Parkinson’s disease, psychosomatic sickness, or even a psychological disorder. According to Newsome, a diagnosis of stiff person syndrome is delayed an average of seven years.
“Sometimes, [patients] get labeled crazy,” he said, “because on exam early on, there aren’t the hallmark features of stiff person syndrome.”