Celine Dion performing during her Las Vegas residency. Image courtesy of CNN.
Decorated Canadian singer-songwriter Celine Dion reveals she was recently diagnosed with a rare neurological autoimmune disorder called Stiff Person Syndrome. The diagnosis has lead her to cancel her summer 2023 shows, as well as re-schedule others to 2024.
According to Yale Medicine, Stiff Person Syndrome is believed to be an autoimmune reaction that occurs when the body’s own immune system attacks and destroys a vital protein called Glutamic Acid Decarboxylase (GAD). This protein is responsible for making a substance called gamma-aminobutyric acid (GABA), which helps to regulate motor neuron cells, and ensure they’re not over-active.
People with low levels of GABA have neurons that continuously fire, even when they’re not supposed to. This results in debilitating symptoms like violent muscle spasms, muscle stiffening in the torso and limbs, and difficulty with walking and movement. GABA also helps to regulate symptoms of depression and anxiety, so those with Stiff Person Syndrome are at a higher risk for developing these mental health conditions.
The 54-year-old Grammy award-winning artist has said that the condition has had a profound impact on her life, commenting: “Unfortunately, these 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.”
Getting diagnosed with Stiff Person Syndrome can be a challenge, since the symptoms can mimic many other neurological health conditions, like multiple sclerosis, Parkinson’s disease, fibromyalgia, and more. Patients typically undergo a thorough examination, such as blood tests and spinal fluid tests, to find elevated levels of anti-GAD antibodies, in order to get diagnosed.
Being diagnosed was not a straightforward process for Dion herself. “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.
Although anyone can develop Stiff Person Syndrome, the National Organization for Rare Disorders reports that adults ages 30 to 60 are most commonly diagnosed with the condition. The condition is considered rare, with only one in a million individuals being diagnosed with SPS among the general population.
There is no cure for Stiff Person Syndrome, but treatments like steroids to control inflammation, plus the use of sedatives and muscle relaxants to control muscle spasms, can help. Sometimes Stiff Person Syndrome patients are also prescribed immunotherapies to help calm an over-active immune system that’s destroying their GAD proteins.
In an emotional video on her Instagram, Dion said, “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it’s been a struggle.”
To learn more about Stiff Person Syndrome, visit the SPS Research Foundation’s website.