Singer Celine Dion paused all of her performances after she was diagnosed with Stiff Person Syndrome, bringing attention to this rare disorder.
The five-time Grammy winner posted an emotional video on Instagram explaining her decision to postpone her 2023 tour.
“I miss seeing all of you, being on the stage, performing for you. I always give 100% when I do my shows, but my condition is not allowing me to give you that right now,” she said.
The announcement left many with questions about the disorder.
What is Stiff Person Syndrome?
Stiff Person Syndrome is a rare neurological disease that causes progressive muscle stiffness and painful spasms that can be triggered by a variety of things, including sudden movement, cold temperature, stress or unexpected loud noises, according to John Hopkins Medicine. One of the biggest problems is falls, Scott Newsome, director of the Stiff Person Syndrome Center at Johns Hopkins Medicine, said in a explanatory video on the disease.
Scientists don’t know exactly what causes it, but the disorder has features of an autoimmune disease.
What is the outlook for people diagnosed with Stiff Person Syndrome?
It can take about seven years for people to get a diagnosis right from when symptoms start, Newsome said. The prognosis is different for every person because symptoms can vary widely. Over time, symptoms can worsen and it becomes more difficult to walk or perform daily tasks. As Stiff Person Syndrome gets worse, the risk of falls grows, and some people may need to use a cane, walker or wheelchair.
How rare is Stiff Person Syndrome?
The disorder affects one or two people in 1 million, according to John Hopkins Medicine. The true rate could be much higher, however, because symptoms can mirror many other medical problems.
The syndrome mostly affects adults in their middle to later years, and females are more commonly affected than men, Newsome said. While the first case was called stiff man syndrome, the patient was actually of a woman. Patients who are diagnosed most likely have an autoimmune disorder like type 1 diabetes.
What’s the treatment for Stiff Person Syndrome?
There is no cure for Stiff Person Syndrome, and the cause is unknown. Only a handful of hospitals specialize in the disorder, including Johns Hopkins Medicine, Yale Medicine and Cleveland Clinic, so patients may need to travel often to see a specialist and get personalized treatment
Doctors prescribe medications to manage symptoms and pain, such as muscle relaxers, steroids and sedatives. Newsome said he’s also trying other treatments, including giving patients botox to help with muscle rigidity and spasms. At the same time, patients will also be treated with therapies that target their immune systems, and they’re urged to seek physical therapy including heat, ultrasound and deep-tissue therapy. Some patients find nonmedical treatments like acupuncture helpful. – BLOOMBERG