Celine Dion’s Still on the ‘Journey’ to Recovery After Stiff-Person Syndrome Diagnosis

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Ever since she announced her diagnosis with Stiff-Person Syndrome more than a year ago, there have been few updates on where Céline Dion’s health is now and what the disease has been like for her.

Dion revealed her diagnosis of Stiff-Person Syndrome, a rare neurological disease, in 2022. Months later, in May 2023, Dion announced that she was cancelling the rest of her European Courage World Tour tour to focus on her recovery.

“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. I want you all to know, I’m not giving up… and I can’t wait to see you again!” she said in a statement at the time.

Since she announced her diagnosis, Dion has only made a few public appearances, including the 66th annual Grammy Awards in February 2024.

What’s Celine Dion’s health like now?

Céline Dion’s doctor Dr. Amanda Piquet, also told Today’s Hoda Kotb that Dion has made “significant progress” after filming her documentary I Am: Celine Dion.

In an interview with Vogue France, she laid down her treatment plans. “I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she said. “Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.”

“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”

Ahead of the release of I Am: Céline Dion, Dion gave an update to her life with stiff-person syndrome and confirmed that she still has hope to perform again one day. “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” she said in a press release for the documentary. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”

She’s set to make her comeback at the 2024 Paris Olympics Opening Ceremony. Sources told TMZ that she’s “feeling fine” right beforehand and she’s getting paid $2 million.

In an interview with Hello Canada in 2023, Dion’s sister, Claudette, called Celine a “strong woman” “doing everything to recover” from Stiff-Person Syndrome. “[We hope to] find a remedy for this awful illness,” she said.

She continued, “It’s an illness we know so little about. There are spasms – they’re impossible to control. You know who people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles. There’s little we can do to support her, to alleviate her pain.”

What disease does Céline Dion have?

What disease does Céline Dion have? Dion revealed that she was diagnosed with Stiff-Person Syndrome, a rare and incurable neurological disease that can cause debilitating muscle spasms, in an Instagram video in 2022.

“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,” captioned the post. “It hurts me to tell you that I won’t be ready to restart my tour in Europe in February.”

She continued in the video, “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.”

Dion continued, “Unfortunately, these 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.”

Dion told fans in the video that, despite the diagnosis, she hopes to perform again. “All I know is singing,” she said. “It’s what I’ve done all my life. And it’s what I love to do the most… 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.”

According to The Stiff Person Research Foundation, Stiff-Person Syndrome affects the central nervous system, specifically the brain and spinal cord. “Patients can be disabled, wheelchair-bound or bed-ridden, unable to work and care for themselves,” the organization states, adding that that the neurological disease with autoimmune features can include symptoms like “hyper-rigidity, debilitating pain, chronic anxiety,” and muscle spasms “so violent they can dislocate joints and even break bones.”

I Am: Celine Dion is streaming on Prime Video. Here’s how to watch it for free.

For more on Celine Dion, read her 2001 memoir, Celine Dion: My Story, My Dream . The book tells the “unforgettable true story” of Dion’s life and career told through her own words. “Told with the wide-eyed honesty of someone who has basked in the glowing adoration of millions of fans but has never lost touch with her working-class roots,” Celine Dion: My Story, My Dream is a must-read for any Dion fan of the woman behind of the greatest voices in music history. “Touching and funny, fascinating and uplifting, it is an exquisitely detailed portrait of a remarkable woman who has never backed away from any challenge…even the most daunting challenges of the heart,” the publisher’s description reads.