Celine Dion’s journey with stiff person syndrome is raising awareness of the rare condition.
Back in December 2022, the singer announced her diagnosis at the same time she announced the cancellation and rescheduling of her 2023 shows at the time.
In a 2022 video on Instagram, Celine Dion said, “I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges.”
Now “I Am: Celine Dion”, a documentary on Dion which came out Tuesday, details her journey with the diagnosis.
“It’s really directed attention to this disease type,” said Dr. Richard Nash, a member physician with the Colorado Blood Cancer Institute. He has also conducted research on autoimmune diseases like stiff person syndrome.
“Treatments aren’t terribly effective, so oftentimes when patients present with stiff person syndrome, the natural history of the disease is that it continues to progress,” he said.
So what exactly is stiff person syndrome, also known as SPS?
It’s a rare autoimmune neurological disorder. It can cause stiffness or painful spasms in your muscles and impacts each person differently. These symptoms can be triggered by stressful events or changes in temperature, for example.
Only 1 in about 1 million people are diagnosed with the condition, according to the Cleveland Clinic.
Doctors say Celine Dion being open about her diagnosis has also brought more attention to the research being done on the incurable disorder.
“We’ve seen this with other disease types where an individual who is a celebrity or well-known within the community acts as a spokesperson for the disease type or an organization that is kind of interested in developing research,” Dr. Nash said.
Dr. Nash is involved in numerous studies and research looking at treatments for this condition.
“We started exploring or investigating the effects of transplant for patients with autoimmune disorders,” he said.
Dr. Nash was part of a study that found that after patients with stiff person syndrome received a stem cell transplant, they saw clinical improvement in the stiffness index and walking time, for example. The study was published in January.
“This is research, so we are still trying to explore what the benefits are of the treatment, and then there are risks associated with the treatment as well,” Dr. Nash said.
@scrippsnews Celine Dion’s new documentary discusses the singer’s journey with her stiff person syndrome diagnosis. While there is no cure for the condition, it has brought more awareness to research on possible treatments. #CelineDion #StiffPersonSyndrome #news #medicalresearch ♬ original sound – Scripps News
