Singer Celine Dion says being diagnosed with Stiff Person Syndrome (SPS) is one of the “hardest experiences of my life” in an emotional Instagram post.
“As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS),” the “My Heart Will Go On” singer wrote on Instagram, in recognition of International SPS Awareness Day.
“Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible,” she continued. “I am deeply grateful for the love and support from my kids, family, team and all of you!”
The moving Instagram caption accompanied a photo of the singer posing alongside her three children—René-Charles Angélil, 23, and 13-year-old twins Eddy and Nelson.
Stiff person syndrome is a rare autoimmune and neurological disorder that causes random muscle stiffness and painful spasms that often worsen over time, according to Johns Hopkins.
Dion shared her diagnosis with the public in December, 2022 with an emotional video posted on her Instagram account.
“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 and to talk about everything that I’ve been going through,” the award-winning singer said, at times fighting back tears.
“It hurts me to tell you that I won’t be ready to restart my tour in Europe in February,” she continued. “Recently, I’ve been diagnosed with a very rare neurological condition called stiff-person syndrome, which affects something like one in a million people. While we’re still learning about this rare condition, we now know that this is what has been causing all of the spasms that I’ve been having.”
According to the Stiff Person Syndrome Foundation, SPS impacts the central nervous system—specifically the brain and spinal cord. As a result, people diagnosed with SPS can become bed-ridden, wheelchair-bound and disabled, and may not be able to work or care for themselves independently.
The foundation adds that common symptoms of the disease include “hyper-rigidity, debilitating pain, chronic anxiety,” and muscle spasms “so violent they can dislocate joints and even break bones.”