Her Rare Condition Explained – Hollywood Life


celine dion health
Image Credit: Priscilla Grant/Everett Collection

“My Heart Will Go On” hitmaker Celine Dione is now unable to control her muscles, according to her sister, Claudette Dion, in December 2023 comments. Last spring, the singer canceled her Courage world tour due to complications from her illness. The songstress shared in May 2023 that it was a “tremendous disappointment” and said that refunds would be available to fans. “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,” she said in a statement.

Celine is one of the most popular singers in the world. Not only is she known best for her iconic song in the Titanic movie, but she’s gone on to win a total of five Grammy Awards in her career. In addition, the blonde beauty became a Las Vegas residency legend with over 15 years of residency time under her belt! With such a vivacious personality and a love of performing, it seems crazy to think that the last time the Canadian powerhouse has performed live was on July 5, 2019 at the BST concert in Hyde Park, London.

While COVID-19 sidelined many performers, Celine faced an all too different health scare entirely. After postponing her tour several times post-pandemic, in December 2022, Celine made the announcement that she was suffering for a very rare health condition, on that may keep her from the stage for a very long time. After canceling her tour in May 2023, Celine promised that she wouldn’t “give up” and said she hoped to get on the road when her strength is back. Here’s everything to know about her health scare,  how she’s doing today, and more.

Celine Dion Diagnosed With Stiff Person Syndrome

Celine shocked the world with somber news in 2022 when she revealed her Stiff Person Syndrome (SPS) diagnosis with an emotional video across social media, including Instagram. The rare condition, which often affects around “about one or two in a million people,” is known to cause a series of neurological health issues, per John Hopkins Medicine.

“I’m sorry it’s taken me so long to reach out to you,” Celine said in an Instagram video at the time. “I miss you all so much and I can’t wait to be on stage 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.”

What Is Stiff Person Syndrome?

Stiff person syndrome can cause muscle rigidity and spasms, heightened sensitivity to sound stimuli and lights, as well as emotional distress that can cause muscle spasms, according to the National Institute of Neurological Disorders and Stroke. It is so rare, it can take years to diagnose and at present, there is no cure.

“It frequently is associated with muscle spasms, which could be quite severe. These can cause falls, severe pain and significant disability,” said Dr. Emile Sami Moukheiber of the Stiff Person Syndrome Center at Johns Hopkins Medicine, to CNN. “Falls from severe spasms are very common. These spasms can be precipitated by startle, severe emotions, cold weather.”

The truth is that the disease cab manifest in such extreme ways that some folks with stiff person syndrome, like this young woman on TikTok, can’t even walk on their own.

How Long Has Celine Dion Been Sick

The 54-year-old has been struggling with SPS for over a year, as she also had to postpone her tours in April 2022. “I’m so sorry we have to change our tour plans for Europe one more time; first we had to move the shows because of the pandemic, now it’s my health issues causing us to postpone the shows. I am doing a little bit better…but I’m still experiencing some spasms,” she revealed via Instagram on April 29, 2022. The mom-of-three not only had to postpone the tour in April 2022, but she also was forced to do the same in Dec. of that year as her condition had not improved enough to return to the stage.

In April, Celine said she was “doing a bit better”, however, the recovery was “going very slow.” And eight months later, sadly, Celine was not recovering at the speed she had hoped. The condition affects her ability to walk, use her vocal chords at “100%” capacity, and more. “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,” Celine assured her supporters in Dec. “I’m working hard with my sports medicine therapist every day to build back my strength and ability to perform again.”

celine health
Celine Dion is a world-famous singer & songwriter. (Everett Collection)

The talented artist also came forward about the health condition in Jan. 2022, however, she had not revealed the official diagnosis yet. Celine released a statement via Instagram and shared with her 5.5 million followers that “severe and persistent muscle spasms” are “preventing her from performing.”

How Is Celine Dion Doing Today?

Celine appeared to be on the road to recovery, as she created new music for the 2023 film, Love Again, starring Priyanka Chopra. The Canada native will appear in the film alongside Priyanka and Outlander‘s Sam Heughan. Celine took to Instagram in Nov. 2022, just weeks ahead of her diagnosis clip, to announce her appearance the rom-com. “See you at the movies! Celine is starring alongside @priyankachopra and @samheughan and releasing new music for the romantic comedy LOVE AGAIN (new title!) coming to movie theaters MAY 12 (new date!),” her team captioned the post.

Her sister Claudette reportedly spoke to a local news outlet in Canada about her sister’s health, as reported by Marca, in January of 2023. “I am confident that life will give her back what she gave because she is an extremely intelligent woman, very generous and talented and in love with life as well,” Claudette said at the time. “Rather than crying over her fate, I try to send her positive vibes in the hope that one day she will go back on stage. I truly believe in the power of love. I wish her the best of luck, that’s for sure. She is surrounded by specialists as she works to recover.”

Celine has continued working to improve her condition. With the announcement that she was canceling her Courage world tour, she shared that she still couldn’t hit the road. “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%,” she said on May 26, 2023. “I want you all to know, I’m not giving up… and I can’t wait to see you again!”

Months after Claudette’s last update on her sister, she reportedly spoke to Le Journal de Montreal (via SheMazing) in August 2023 to deliver somber news about Celine. “We can’t find any medicine that works, but having hope is important,” Claudette reportedly told the outlet. The concerned siblings noted that she thinks Celine needs adequate rest. “I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game,” she added. “At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”

In addition, Claudette revealed that her sister, Linda Dion, has moved in with Celine is reportedly her live-in caretaker in Las Vegas. “When I call [Celine] and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard,” she told the outlet. “She’s listening to the top researchers in the field of this rare disease as much as possible.” Despite the ongoing health struggles for their siblings, the family reportedly “trusts” that things will improve.

In November 2023, Closer reported that Celine “feels stronger now” despite having “gone through hell” over the past year. “She doesn’t want to hide out at home any longer,” an insider told the outlet. “She has good days — even weeks — and she’s committed to sharing those times with her children.”

A month later, Claudette opened up again about Celine with another update. “She’s working hard, but she doesn’t have control over her muscles,” Claudette told 7 Jours (via the Daily Mail) for a December 2023 interview. “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

Still, the family hasn’t given up hope for Celine returning to the stage. Claudette explained, “It’s true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know.”

A report followed days later, claiming Celine is working on regaining muscle control with physicians. “Celine is a fighter,” a source close to the singer told US Weekly for a December 22, 2023 report. “She doesn’t have as much control over her muscles as she did before, but she’s working with doctors and physical therapists to get better. ” The insider added, “Celine has been taking time to focus on her health but plans to take the stage again once she is given the go-ahead by her medical team.”

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