CÉLINE Dion opened up about her health struggles and grief journey in a new interview with Hoda Kotb.
Céline, 56, first revealed her diagnosis of stiff person syndrome in December 2022 in an emotional video posted to Instagram.
In her first broadcast interview since the diagnosis, Céline told Hoda that she first began feeling symptoms 17 years ago.
She went on to talk about her husband, René Angélil, who died on January 14, 2016, after a battle with cancer. Her brother, Daniel, died two days later, also from cancer.
“At that time, my brain, my personality was – the show must go on,” Céline explained. She added that she ignored her symptoms to take care of her husband.
“Crying like a baby right now [crying emoji] we will never forget you celine dion!! you’re in our hearts forever,” one fan wrote on X, formerly Twitter, following the interview.
“So emotional to see how positive Celine Dion is despite her health problems. What a resilient woman,” another added.
Read our Céline Dion interview blog for the latest updates…
Céline Dion’s recent rare public appearance
Due to Céline Dion’s condition, she hasn’t been seen in public frequently.
She pushed through her symptoms at this year’s Grammy Awards to present the Album of the Year to Taylor Swift.
“When I say that I’m happy to be here,” Céline said, choking back tears of her own. “I really mean it.”
The audience was overcome with excitement to see Céline and she received a standing ovation.
How SPS is treated
There is no cure for stiff person syndrome, however, patients can work with doctors to ease the symptoms.
Many patients are treated with diazepam, which can also be used as an anti-anxiety medication.
Pain relievers can also help ease symptoms.
Explaining stiff person syndrome, continued
Stiff person syndrome causes persistent spasms and is extremely rare, impacting only about one in one million people.
The neurological disease is typically found in individuals between 40 and 60 years old.
Signs of the condition include:
- Intermittent spasms which then become continuous
- Minor sensory stimuli (being more sensitive to noise, light, and touch)
- Severe spasms
- Impaired breathing (in advanced cases)
More on Céline Dion’s diagnosis
What is Stiff Person Syndrome?
Stiff-Person Syndrome is a rare neurological disorder that progresses overtime.
The condition causes pain and muscle spasms that worsen over the years.
According to Contact A Family, the condition is characterized by “progressive stiffness and painful spasms in the back and limbs, which are often triggered by touch, noise or anxiety, and exacerbated by movement.”
There is currently no cure, but death from the condition is rare.
Strong spasms to the chest can sometimes cause difficulty breathing.
Watch a trailer for Céline Dion’s documentary
Celine Dion sobs over ‘struggle’ with Stiff Person Syndrome and insists she will ‘crawl’ to shows in documentary trailerCéline’s message
“I want you to come and see me again. I would like to invite you to sing with me again. You’ve been my supporters for so many years,” Céline said to the camera when asked to send a message to her fans.
She then admitted that sometimes she worries her fans have forgotten her, or that they don’t know how much they mean to her.
Céline told Hoda that she was ready to get back on stage before belting out a tune for the interviewer.
‘I will come back’
Céline said that she was determined to get back on stage.
“I don’t want to be scared of myself,” she said.
“Music is the language, and it’s in everybody’s life,” Céline added before holding back tears.
Hoda even teared up listening to Céline talk about her desire to get back to performing.
Céline then sang a few lyrics that put a smile on Hoda’s face.
Trapped in a bunker
Céline joked that she felt like she was trapped in an emotional bunker.
“I’m going to go back on stage. Even if I have to crawl, if I have to talk with my hands,” she told Hoda.
“I am Céline Dion, and my voice will be heard,” Céline added.
“It’s not because I have to, it’s because I want to, and I miss it.”
Céline’s struggle to sing
A clip from Céline’s documentary revealed her struggling to sing and breaking down in tears when she was unable to.
When asked what the disease took away from her, she responded, “It didn’t take anything away from me.”
Film’s director opens up about Céline’s emergency
Irene Taylor Brodsky, the documentary’s director, joined Céline for her interview with Hoda.
Irene was present for one of Céline’s most severe medical emergencies.
“I wasn’t sure if she was going to survive it,” Irene said as she added that it was one of the hardest moments of her life.
‘I Am… Céline Dion’
Hoda asked Celine to fill in the blank “I am _____.” Céline responded, “I am Céline Dion.”
She explained that it was intimidating to say her name because she hears it so often.
Céline told Hoda that she wanted to release a documentary to explain to fans where she’s been the past few years.
Living with SPS
When asked what it was like living with SPS, Céline said she takes it one step at a time.
She explained that too much work or too little work can heighten her symptoms.
Even an unexpected touch can trigger her symptoms.
Time to tell the world
Céline said that she didn’t want to lie to her fans anymore about having a “sinus infection.”
“It was time to tell the world,” she explained.
There is no cure for SPS, but Céline’s doctors felt that her symptoms were treatable.
Céline never thought, ‘why me?’
SPS impacts one in one million individuals. Hoda asked Céline if she ever asked why she was the one impacted.
“I could’ve gone that route,” Céline began.
She said that she never questioned, “why me?” because she knew it wouldn’t take her syndrome away.
‘Is this the end of my career?’
When Céline finally received her SPS diagnosis, she wondered if it would end her career.
“I always felt like I was going to fall,” she told Hoda.
Céline explained that every moment makes her body feel like her joints are going to lock.
COVID gave Céline an opportunity
The coronavirus pandemic allowed Céline to stop performing and focus on her health.
She stopped taking her prescription, but her health continued to decline.
Céline continued to pray that doctors would find something so that she could have an answer.
Céline’s failing health
Céline told Hoda that she tried many medications before receiving her diagnosis.
“I did not know, honestly, that it could kill me,” Céline said as she explained that trying multiple medications without a diagnosis harms the body.
She took about 90 mg of valium a day to relax her muscles. Her body began to adjust to the medications, so she had to up the dosage.
‘Not telling the truth was too much to carry’
Céline explained that she ignored symptoms to help care for her husband who was battling cancer.
“I had to hide. I was trying to be a hero,” she told Hoda.
Her husband died in 2016 and just two days later, her brother died from cancer too.
“At that time, my brain, my personality was – the show must go on,” she explained.
Céline continued to perform despite her growing symptoms.
Céline’s ‘scary’ show in 2008
Céline opened up about a show in 2008 where she first began to notice a change in her voice.
She said she was panicking before the show to a sound employee.
“I was trying to compensate and find another way to have a voice, so we lowered the songs a little bit,” Céline said.
She described her new technique of making her voice sound more nasally, and if all else failed, she asked the audience to sing along.
‘It’s like someone’s strangling you’
Céline explained that she felt like she was being strangled when she sang.
Her throat spasms only got worse and she found herself entangled in a medical mystery.
Difficult, painful, challenging
Céline said that life has been “difficult, painful, and challenging,” since her diagnosis.
She first noticed that her throat was spasming over 17 years ago.
Céline began concerned for her health while on a tour stop in Germany. She said she couldn’t control her voice and wasn’t able to exercise her voice before a show.
‘I was not fine’
Céline Dion said that her song, Courage, defines her life right now.
The first lyric of the track is, “I would be lying if I said I’m fine.”
She told Hoda that she was not fine.
Tune in now!
Tune in now for Céline Dion’s exclusive interview with Hoda Kotb on NBC!
This is Céline’s first on-camera sit-down since she announced her stiff person syndrome diagnosis in 2022.
How to watch
Céline Dion’s interview with Hoda Kotb airs tonight on NBC at 10 pm EST.
The interview will include a sneak peek of Céline’s Amazon Prime documentary, set to be released on June 25.
You can also stream tonight’s interview with subscriptions to the following services:
Watch a sneak peek of tonight’s interview
Celine Dion admits she ‘feels her body leaving her’ with stiff person syndrome
