Tragic singer Celine Dion is not yet dependent on a wheelchair to get around and plans to perform again, according to her sister, actor Claudette Dion.
Ms Dion shut down online speculation that the 55-year-old singer cannot walk due to a rare and cruel condition called ‘stiff person syndrome’ (SPS).
The neurological condition in which the body attacks nerve cells. It is progressive and incurable. It has serious effects on mobility and can turn patients into ‘human statues’, causing them to have difficulty walking or talking.
The condition, which is thought to affect only one in a million people, can also lead to spasms that generate enough force to break bones.
Celine Dion revealed in December that she was suffering from ‘one-in-a-million condition stiff person syndrome’
Typically, patients are diagnosed around the age of 30-50, and they are usually women.
The star first announced her diagnosis in December 2022 via a tearful Instagram post and months later she canceled her world tour, which was set to kick off in late 2023.
In September, a video surfaced on YouTube titled “Celine Dion’s Family Reveals How She Is Dying,” in which an unknown narrator says her terminal illness is “progressing very quickly.” The video has since been republished on TikTok, where it has been viewed more than 430,000 times.
The clip sparked rumors on social media that the Grammy award-winning artist is now wheelchair-bound and struggles to move.
However, Celine’s sister has denied this is the case.
‘I know she is morally and mentally strong. She’s not depressed at all… she really has a zest for life. We will get through this,” her sister, Claudette Dion, told the French-language site showbiz.net.
As for the rumours, 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 using social media to document their condition – and reveal the realities of everyday life with the devastating disease.
On TikTok, young patients express their pain – which feels like muscles are being ‘torn from the bone’, and severe muscle cramps.
One patient is 33-year-old Chelsea Lawrence of Minnesota (below), who suffered in pain for six years before being diagnosed with SPS.
She documented her deteriorating health for her 150,000 TikTok followers, regularly sharing videos of her writhing in pain and struggling to breathe as her muscles tensed.
In a video posted last year, Ms Lawrence showed herself screaming in intense pain as she lay stretched out in bed
In a video posted last year (below), Ms Lawrence filmed herself lying in bed with her limbs spread out.
As she screams in pain, a text appears on the screen that reads, “My muscles are in so much pain it feels like they are being torn from the bone. Then twisted and pulled! They’re just getting tighter and tighter!’
“I can have these violent attacks a few times a week!” the text reads. ‘My chest feels like someone sucked all the air out of it! Leg is twisted and foot cramps so bad!’
As the pain medication takes effect, her limbs relax.
Although there is no cure for stiff person syndrome, medications such as muscle relaxants and sedatives can be given to relieve symptoms.
Some patients with more severe symptoms are also given more powerful medications that suppress the immune system.
In another video posted in November, Ms. Lawrence appears to be choking as she lies in bed as her face trembles and she struggles to get out words.
‘Fully conscious and slowly suffocating. This is how fast I left the hospital,” reads the text on the screen. “A python wraps itself around slowly.”
Mrs. Lawrence died in April, although her cause of death is unclear. It is rare for the condition to be fatal. However, many patients die from complications such as blood clots and wound infections.
Chelsea Lawrence, who suffers from Stiff Person Syndrome, died in April 2023, although her cause of death remains unclear.
Rose Merrill, 24, from Colorado, also has SPS and regularly shares updates about her disease on social media. In one video, she is seen coughing violently and convulsing.
She says in the video that her lungs are “filling with fluid that I have to suck out” and that her body is “gradually turning on itself.”
“I’m losing my independence, my ability to get out of bed, my ability to stay awake all day or sleep through the night.”
“And yet I have to accept that this nightmare is somehow my normal.”
Jennifer Trujillo, 39, a mother of six in Washington, began experiencing SPS symptoms during her pregnancy in 2015, her mother said. GoFundMe page. However, the diagnosis was only made in 2020.
Her videos on TikTok show her with broken bones and dislocated joints as she lies on the ground screaming and struggling to breathe.
In a video posted in 2021, she lies on the floor as four of her children surround her to help during a two-and-a-half-hour bout of pain and cramps.
“Together we will get through this,” says one of the children. “I love you,” another added. ‘It’s not your fault.’
Experts don’t know the exact underlying cause of SPS, but they think it may be caused by an overreaction of cells in the immune system. About 40 percent of patients also have the autoimmune disease type 1 diabetes.
Other autoimmune diseases such as vitiligo, which causes white patches on the skin, and pernicious anemia, are also 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, mother of six children with SPS, has shown videos of her children helping her with cramp attacks
Low levels of GABA cause the nerves to continually fire when they are not supposed to, resulting in spasms and stiffness.
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.
Due to 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 test that measures electrical activity in the nerves, called electromyography (EMG).
Doctors insert a needle directly into the affected muscles and record the electrical activity there.
Despite Celine Dion’s pain, she is not giving up plans to return to the stage, according to her sister.
Claudette Dion told showbiz.net that the icon is recovering in Denver and is closely monitoring her doctors’ care plan because she “wants to come back, that’s for sure.”