SPS, also called Moersch-Woltman syndrome, is a neurological disorder that causes muscle spasms and rigidity. It can greatly inhibit someone’s ability to perform daily tasks. Dion said she has not been able to use her vocal cords to sing the way she’s used to because of this condition.
“It’s the classic Tin Man Syndrome, where you are a ‘tin man’ that is rusted through and through. Walking, talking, eating, swallowing—it affects every part of your body that involves muscles," Sharon Stoll, DO, a neuroimmunologist at Yale Medicine, told Verywell.
This condition affects all muscles, the brain, and the spinal cord, but Stoll said it typically doesn’t affect cognitive function.
People with SPS may have overactivity in their muscles, which can cause tension and stiffness in different areas of their bodies. SPS can worsen over time, but the progression varies from one patient to another.
Because SPS is rare, researchers are still trying to understand some specifics about the condition. There is no cure for the disease, but there are treatments to help patients manage their symptoms, Stoll said.
Some treatments include diazepam, an anti-anxiety and muscle relaxant drug, or medications that help ease muscle spasms, such as baclofen and gabapentin. Intravenous immunoglobulin (IVIg), a type of antibody treatment, has also been shown to reduce stiffness, sensitivity to noise, touch, and stress for people with SPS. Usually, patients will start with one of the oral medications and then transition to an IVIg treatment over time, Stoll explained.
Who Should Worry About SPS?
SPS comes with major challenges, but it’s extremely rare. Dion may be the first celebrity to share a diagnosis, said William Buxton, MD, director of neuromuscular and neurodiagnostic medicine at the Pacific Neuroscience Institute.
“I can’t say I’ve heard of any other public figures developing it,” Buxton told Verywell. “It’s so rare that it’s not something that most people who present with difficulty walking or muscle pain will end up having.”
He added that he sees about one SPS diagnosis at most each year. He said that people who have difficulty walking or experience muscle stiffness shouldn’t assume they have SPS right away. Instead, they should see if the issue resolves on its own, or get screened for a more common condition like spinal stenosis. If other conditions are ruled out, a blood test can be used to make an SPS diagnosis.
While Dion is taking a break from performing to focus on recovery, there’s no shortage of love for the singer.
Fans of Dion have left heartfelt and supportive messages in the comment section of the singer’s Instagram post. The Stiff Person Syndrome Research Foundation (SPSRF) has also been in touch with Dion to send encouragement and support. A spokesperson for the organization told Verywell that they’re grateful to Dion for shedding light on SPS.
“In one day, Celine woke the world up to SPS,” the spokesperson wrote an email. “She is using her beautiful and powerful voice to shine a light on this devastating disease.”
