Celine Dion Just Announced She Has a Rare Disorder — What Is Stiff Person Syndrome?
"I wasn't ready to say anything before, but I'm ready now."
On Thursday, beloved singer Céline Dion announced that she has a rare disorder called stiff person syndrome (SPS), which has forced her to postpone dates on her 2023 European tour.
The five-time Grammy award winner posted an emotional video to her Instagram, letting her 5.2 million followers hear the news first. “Hello everyone,” she begins. “I’m sorry it’s taken me so long to reach out to you. I miss you all so much.” What is stiff person syndrome, and how is it affecting Dion? Learn all about the disorder and read Dion’s full statement below.
Stiff person syndrome is a neurological disorder.
According to the National Institutes of Health (NIH), stiff-person syndrome is a rare neurological disorder that causes rigidity in the trunk and limbs. It also increases a person’s sensitivity to touch, noise, and emotional stress, all of which can spark painful muscle spasms. These spasms usually last for minutes, but sometimes last for hours. SPS affects twice as many women as men, and most people receive a diagnosis between the ages of 30 and 60.
Early symptoms, which can come and go, include aching, muscle stiffness, and pain, especially in the lower back and legs, but also in the shoulders, neck, and hips. As the disease progresses, the stiffness becomes more fixed. Muscle spasms in the abdomen can make some patients feel more full than normal, which leads to unintentional weight loss. Muscle spasms in the chest may require emergency medical intervention if the respiratory muscles are affected. Many patients with SPS experience anxiety as well, and some patients develop thyroid issues, anemia, and epilepsy.
Unfortunately, researchers don’t yet know what causes SPS — the name is intentionally vague. It is often misdiagnosed as Parkinson’s disease, multiple sclerosis, and fibromyalgia, but a blood test can rule out these other diseases.
The diagnosis affects Dion’s voice and body.
As Dion states in her video, “the 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.” These symptoms led her to cancel the European leg of her tour, a move that she hopes will give her the time to regain strength. For now, she plans to perform again starting August 26, 2023. The 2023 European tour dates have been rescheduled for 2024.
Read Celine Dion’s full message.
“Hello everyone. I’m sorry it’s taken me so long to reach out to you. I miss you all so much, and I can’t wait to be onstage talking to you in person. As you know, I’ve always been an open book. And I wasn’t ready to say anything before, but I’m ready now. 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.
“Recently, I’ve been diagnosed with a very rare neurological disorder 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 this is what’s been causing all of the spasms that I have been having. Unfortunately, the 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.
“It hurts me to tell you this today. This means I won’t be ready to restart my tour in Europe in February. I have a great team of doctors working alongside me to help me get better, and my precious children, who are supporting me and giving me hope. 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. All I know is singing; it’s what I’ve done all my life, and it’s what I love to do the most. I miss you so much, and I miss seeing all of you, being on the stage, performing for you. I always give 100 percent when I do my shows, but my condition is not allowing me to give you that right now.
“For me to reach you again, I have no choice but to concentrate on my health at this moment. And I have hope that I’m on the road to recovery. This is my focus, and I’m doing everything that I can to recuperate. I want to thank you so much for your encouraging wishes of love and support on my social media. This means a lot to me. Take care of yourselves. Be well. I love you guys so much, and I really hope I can see you guys again really soon.”
