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 Cydney Yeates For Dailymail.Com

Published: | Updated:

Céline Dion is seen breaking down in tears in her heartbreaking new Amazon Prime documentary, as she demonstrates the devastating impact stiff person syndrome has had on her vocals, 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 prior after 17 years of symptoms.

Laying bare the reality of living with the disease in her deeply personal film, Céline reveals just how destructive the illness has been on her voice – and even showcases how she now struggles to hit 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 rigid because of stiff-person syndrome, and that it's like…'

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

In her new Amazon Prime documentary, the 56-year-old superstar attempted to sing, but was unable to prevent her voice from breaking 

Céline then attempts 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 to show this to you. 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 very good,' she admits. 'I think I had some stuff that was amazing.

'But there's been moments I had to go to the studio, and I knew they wanted Céline Dion.

'Who's Céline Dion? Céline Dion is the one who sang all by myself… did the highest note ever and whatever, she's the best.'

This heartbreaking scene is just one of several devastating moments from her eye-opening documentary, which was released on June 25.

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

Céline was forced to postpone her European tour in 2022 due to the severity of her illness 

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

In the video, she looks on helplessly as doctors gently lay her in a comfortable position and check her vitals.

After receiving assistance, the singer is finally able to sit upright and covers herself in a blanket before admitting her embarrassment at losing control of her body in front of the cameras.

'Every time something like this happens it makes you feel so embarrassed and so, like, I don’t how to express it, it’s just… you know, like to not have control of yourself,’ she tells the camera.

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

'Hello everyone, I'm sorry it's taken me so long to reach out to you. I miss you all so much and can't wait to be on stage talking to you in person,' she wrote.

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

Celine cancelled her world tour the following year as she continues to battle with the neurological disorder

'I've been dealing with problems with my health for a long time, and it has been really difficult for me to face my challenges and to talk about everything that I've been going through.

'Recently, I've been diagnosed with a very rare neurological disorder called the Stiff Person Syndrome, which affects one in a million people.

'While we're still learning about this rare condition, we now know this is what's been causing all the spasms I've been having.'

Detailing the impact the condition has had on her, 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.

'It hurts me to tell you today that this means I won't be ready to restart my tour in Europe in February.'

She added: '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 help.

            WHAT IS STIFF PERSON                                        SYNDOME?  

Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.

Estimates suggest it affects around 70 people in the UK and 330 in the US and remains little understood. Around twice as many women as men are hit with it.

The progressive disease sees patients' stiffness increase over time and can lead to them needing to use a wheelchair. 

There tend to be three types of the syndrome:

  • Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
  • Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
  • Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.

Experts do not know exactly what is behind the disease. 

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

Around 40 per cent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.

Other autoimmune conditions like vitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why. 

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

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

What are its symptoms? 

The main symptoms caused by stiff person syndrome are spasms and rigidity of the torso and limbs.

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

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

The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.

Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.

The lack of GABA — which regulates anxiety — in their system also affects mental health. 

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'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. I miss seeing all of you being on the stage performing for you.

'I always give 100 percent when I do my show but my condition is now 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 I can to recuperate.

'I want to thank you so much for your wishes and 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 again real soon.'

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

Céline previously described what it's like to sing with the condition, telling the Today show that it feels like 'somebody is strangling her.'

'It's like somebody is strangling you,' she told Hoda Kotb. 'It's like somebody is pushing your larynx/pharynx.'

She added that it's hard for her to control her pitch due to 'spasms.'

And it doesn't only affect her voice, as she continued: '[The spams] can also be in the abdominal, can be in the spine, can be in the ribs.'

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