Celine Dion’s sister reveals the megastar is NOT in a wheelchair, despite claims she’s struggling to walk… but videos of other sufferers of stiff person syndrome shows the devastation that could await her

• Celine Dion’s sister has revealed the singer, who has been diagnosed with disabling Stiff Person Syndrome, doesn’t yet need a wheelchair
• Other sufferers have are using TikTok to share the reality of living with it
• READ MORE: What is Celine Dion’s one-in-a-million disease?

Tragic singer Celine Dion is not yet reliant on a wheelchair to get around and plans to return to performing, according to her sister, actor Claudette Dion. 

Ms Dion shut down online speculation that the 55-year-old singer is unable to walk due to the rare and cruel disorder, stiff person syndrome (SPS).

The neurological condition in which the body attacks nerve cells. It is progressive and incurable. It severely impacts mobility and can turn sufferers into ‘human statues,’ leaving them struggling to walk or talk.

The condition, which is thought to affect just one in a million people, can also lead to spasms that generate enough force to fracture bone.

Celine Dion revealed in December that she was suffering from the one-in-a-million condition stiff person syndrome

Usually, patients are diagnosed around ages 30-50, and they are mostly women. 

The star first revealed her diagnosis in December 2022 via a teary Instagram post, and months later canceled her world tour, which was scheduled to begin at the end of 2023.

In September, a video surfaced on YouTube entitled ‘Celine Dion’s Family Reveals How She Is Dying’, in which an unidentified narrator says that her incurable disease is ‘progressing very quickly’. The video has since been republished on TikTok, where it received more than 430,000 views.

The clip triggered rumors on social media that the Grammy award-winning artist is now wheelchair-bound and struggling to move.

However, Celine’s sister has denied this is the case. 

‘I know that morally, mentally, she is strong. She is not depressed at all … she really has the joy of living. We will get through this,’ her sister, Claudette Dion, told the French-language site showbizz.net.

As for the rumors, Ms Dion said: ‘Why do they say she is in a wheelchair? Why do they say she had cancer? Why are you inventing?’

Meanwhile, patients with stiff person syndrome are taking to social media to document their condition – and reveal the reality of day-to-day life with the devastating illness. 

On TikTok, young sufferers evidence their pain – which feels like muscles are ‘being shredded off the bone,’ as well as violent muscle spasms.

One sufferer is 33-year-old Chelsea Lawrence from Minnesota (below), who spent six years in agonizing pain before receiving a diagnosis of SPS. 

She documented her deteriorating health to her 150,000 TikTok followers, regularly sharing videos of herself writhing in pain and struggling to breathe as her muscles tightened. 

In a video posted last year, Ms Lawrence showed herself screaming in intense pain while splayed out in her bed

In one video posted last year (below), Ms Lawrence filmed herself lying in bed with her limbs splayed out.

 As she screams in pain, text appears on the screen reading, ‘My muscles are in so much pain it feels like there [sic] being shredded off the bone. Then twisted and pulled! They just get tighter and tighter!’

‘I can get these stiff attacks a couple times a week!’ the text reads. ‘My chest feels like someone sucked all the air out! Leg is twisted and foot cramping so hard!’

As pain medication kicks in, her limbs relax.

#fyp #undiagnosed #stiffpersonsyndrome #sps #musclespasms #cramps #paintok #ShowYourJOWO #spoonie #chronicpain #chronicillness #dysautonomia #piccline #tubie #ehlersdanlos #zebrastrong #lowpotassium #lowferritin #infusions #degerativediscdisease #stiff #rare #raredisease #craniocervicalinstability #mastcellactivationsyndrome

While there is no cure for stiff person syndrome, drugs such as muscle relaxants and tranquilizers can be given to ease the symptoms.

Some patients with more severe symptoms are also given more potent medicines that dampen down the immune systems.

In another video posted in November, Ms Lawrence appears to be suffocating while lying in bed as her face twitches and she struggles to get any words out. 

‘Fully conscious and slowly suffocating. This is how fast I have declined from the hospital,’ text on the screen reads. ‘A python is slowly wrapping around.’

Ms Lawrence passed away in April, though her cause of death is unclear. It is rare that the condition is fatal. However, many patients die from complications such as blood clots and wound infections.

Stiff person syndrome sufferer Chelsea Lawrence died in April 2023, although her cause of death remains unclear.

Rose Merrill, 24, from Colorado, also has SPS and regularly shares updates on her disease on social media. In one video, she is seen violently coughing and spasming. 

She says in the video that her lungs are ‘filling with fluid that I have to suction out’ and her body is ‘gradually turning against itself.

‘I’m losing my independence, my ability to get out of bed, my ability to stay awake through an entire day or to sleep through an entire night.

‘And yet I have to accept that this nightmare is somehow my normal.’ 

I’ve been struggling lately. We’ve exhausted almost every possible treatment option. The ones I have left get scarier with more side effects. The mobility accomplishments of being able to walk a little pales in comparison to losing the independence of my powerchair. My life has become my bed. When I go out, someone else pushes my wheelchair, and yet even so I am still quickly exhausted. I’m struggling, and I think it’s time to admit it. It’s so hard being praised for progress while experiencing such hardness. I feel like a fraud. Chronic illness is hard, and I wonder often when my body will just surrender to it fully. At the same time though, this account gives me a reason to fight. My boyfriend and family and pets give me something worth living for, despite the immense suffering life brings. I know that while my future will contain physical hardships, I will overcome them mentally and find joy again like I have so many times before. #lifelimitingconditions #stiffpersonsyndrome #chronicillness

 Jennifer Trujillo, 39, a mother-of-six in Washington, began suffering SPS symptoms during her pregnancy in 2015, according to her GoFundMe page.  However, she wasn’t diagnosed until 2020. 

Her videos on TikTok show her with broken bones and dislocated joints, lying on the floor screaming and struggling to breathe. 

In one video posted in 2021, she lays on the ground as four of her children surround her to help during a two-and-a-half-hour pain and spasming attack.

‘We’re going to get through this together,’ one of the children says. ‘I love you,’ another one adds. ‘It’s not your fault.’

Experts don’t know the exact underlying cause of SPS, but they believe it may be caused by an overreaction of cells within the immune system. Around 40 percent of sufferers also have the autoimmune condition type 1 diabetes. 

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

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.

Jennifer Trujillo, a mother-of-six with SPS, has shown videos of her children helping her through spasming attacks

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

Celine Dion reveals she is suffering from stiff person syndrome

 

Tearful singer reveals she has rare one-in-a-million ‘Stiff Person Syndrome’ that turns sufferers into ‘human statues’

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 disabilities.

Because of its rarity and baffling symptoms, which are often mistaken for Parkinson’s disease or multiple sclerosis (MS), diagnosing the syndrome can take a long time.

But if doctors suspect stiff person syndrome, they can confirm it with two tests.

The first looks for specific antibodies in the blood that are released in response to  glutamic acid decarboxylase (GAD).

The second test is a one that measures electrical activity in the nerves, called electromyography (EMG).

Doctors insert a needle directly into affected muscles and record electric activity in them.

Despite Celine Dion’s pain, she’s not given up on plans to return to the stage, according to her sister.

Claudette Dion told showbizz.net that the icon is recuperating in Denver and following her doctors’ care plan closely because she ‘wants to come back, that’s for sure’.

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