Céline Dion breaks down in tears as she reveals what it’s really like to SING with stiff person syndrome – as she lays bare the devastating impact the illness has had on her voice: ‘I don’t want people to hear it’

By James On Jun 25, 2024

Céline Dion breaks down in tears in her heartbreaking new Amazon Prime documentary as she demonstrates the devastating impact stiff person syndrome has had on her singing, admitting she doesn’t want people to hear her sing anymore.

The Canadian superstar, 56, announced in December 2022 that she had been diagnosed with the rare autoimmune neurological disorder, which causes muscle stiffness and uncontrollable spasms, three months earlier after 17 years of symptoms.

Céline exposes the reality of living with the disease in her deeply personal film, revealing in her voice how destructive the disease has been – even revealing how she now struggles to hit the high notes.

“When I try to breathe, my lungs are fine,” she says.

“It’s what’s in front of my lungs that’s so stiff because of stiff person syndrome, and it’s like…”

Céline Dion breaks down in tears after demonstrating the impact of stiff person syndrome on her singing

In her new Amazon Prime documentary, the 56-year-old superstar tried to sing but couldn’t stop her voice from breaking

Céline then tries to sing, but her voice breaks several times.

Overcome with emotion, tears fill Céline’s eyes as she continues, “And that’s what happens.

“And it’s very difficult for me to hear that and show you this. I don’t want people to hear that.’

Céline is still in tears as she reminisces about her career and her talents.

“I think I was really good,” she admits. ‘I think I had something great.

‘But there have been times when I had to go to the studio and I knew they wanted Céline Dion.

‘Who is Celine Dion? Céline Dion is the one who sang all by herself… hit the highest note ever and whatever, she’s the best.”

This heartbreaking scene is just one of many devastating moments from her sensational documentary, released June 25.

Celine wiped away tears as she admitted she didn’t want anyone to hear her voice

Céline had to postpone her 2022 European tour due to the severity of her illness

In another shocking moment, Céline suffers a harrowing 10-minute seizure as her body goes into “crisis” during a filmed consultation with medical professionals.

In the video, she watches helplessly as doctors gently place her in a comfortable position and check her vital signs.

After receiving help, the singer is finally able to sit up and cover herself in a blanket before admitting she is ashamed of losing control of her body in front of the cameras.

“Every time something like that happens, you feel so ashamed and like, I don’t know how to express it, it’s just… you know, like you have no control over yourself,” she says to the camera.

Céline has been open about her debilitating health issues over the years and confirmed her diagnosis in a tearful Instagram post on December 8, 2022, adding that her illness forced her to postpone her European tour.

‘Hello everyone, I’m sorry it’s taken me so long to get back to you. “I miss you all so much and can’t wait to get on stage and talk to you in person,” she wrote.

“As you know, I’ve always been an open book and wasn’t ready to say anything before, but now I’m ready.

Celine canceled her world tour the following year as she continues to battle the neurological condition

‘I have been dealing with issues with my health for a long time, and it has been very difficult for me to face my challenges and talk about everything I have been through.

‘I was recently diagnosed with a very rare neurological condition, Stiff Person Syndrome, which affects one in a million people.

‘While we are still learning about this rare condition, we now know that it is the cause of all the spasms I have had.’

Dion went on to talk about the impact the condition has had on her: ‘Unfortunately these spasms affect every aspect of my daily life, sometimes causing problems when walking and preventing me from using my vocal cords to sing as I normally do. .

“It pains me to tell you today that this means I will not be ready to resume my tour of Europe in February.”

She added: ‘I have an amazing team of doctors working alongside me to help me get better, and my precious children supporting and helping me.

WHAT IS RIGID PERSON SYNDOMA?

Stiff Person Syndrome is an extremely rare condition in which the muscles in the trunk and limbs are alternately cramped and stiff.

Estimates suggest it affects around 70 people in Britain and 330 people in the US, and remains little understood. About twice as many women as men are affected.

Due to the progressive disease, patients’ stiffness increases over time and may require them to use a wheelchair.

There are usually three types of syndrome:

Classic person-man syndrome: When there is stiffness and spasms around the back and abdomen, and sometimes also around the thighs and neck. It can cause back curvature over time.
Stiff Limb Syndrome: Spasms mainly affect the legs and feet, causing them to occasionally lock in place. Hands can also be affected.
Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms of both others, and also affects the head and eyes.

Experts don’t know exactly what’s behind the disease.

But they believe it could be caused by an autoimmune reaction, in which the body attacks its own nerve cells that control muscle movement.

About 40 percent of patients also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is mainly associated with the classic person syndrome.

Other autoimmune diseases such as vitiligo, which causes white patches on the skin, and pernicious anemia are also associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphoma, but researchers don’t yet know why.

In ‘stiff person syndrome’, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulates motor neurons – the nerves that control movement.

Low levels of GABA cause the neurons to fire continuously when they are not supposed to, resulting in spasms and stiffness.

What are the symptoms?

The main symptoms caused by ‘stiff person syndrome’ are spasms and stiffness of the trunk and limbs.

Spasms can be caused by loud noises, with the condition also causing increased sensitivity to sound.

Touch and emotional distress may also be felt more intensely as a result of the condition.

The spasms can be so severe that people fall over or lead to problems walking and other disabilities.

Stress and anxiety also tend to be higher in people with the condition, mainly due to the unpredictability of spasms.

The lack of GABA – which regulates anxiety – in their system also impacts mental health.

‘I work hard every day with my sports medicine doctor to build my strength and my ability to perform again, but I have to admit it has been a struggle.

‘All I know is singing, that’s what I’ve done all my life and what I love to do most. I miss you very much. I miss seeing you all on stage performing for you.

‘I always give 100 percent when I do my show, but my fitness now makes it possible to give you that now.

“In order to reach you again, I have no choice but to focus on my health at this time, and I am hopeful that I am on the road to recovery. This is my focus and I am doing everything I can to recover.

‘I would like to thank you so much for your wishes, love and support on my social media. This means a lot to me. Take care of yourself. It goes well. I love you guys so much and I really hope I can see you again soon.”

There is no cure for SPS, but there are steps that can be taken to slow the symptoms.

Céline previously described what it’s like to sing with the condition, telling the Today show that it feels like “someone is strangling her.”

“It’s like someone is strangling you,” she told Hoda Kotb. ‘It’s like someone is pushing on your larynx/pharynx.’

She added that it is difficult for her to control her pitch due to “cramps.”

And it doesn’t just affect her voice, she continued: ‘[The spams] can also be in the abdomen, can be in the spine, can be in the ribs.’