Last month, music legend Céline Dion gave fans a heartbreaking look at her life with a once-in-a-million illness in her revealing documentary, I Am: Céline Dion.
Viewers were moved by disturbing footage of her agonising seizures that leave her frozen for up to an hour – a symptom of the incurable stiff-person syndrome, which Dion revealed she was suffering from in December 2022.
The condition, triggered by the immune system attacking nerves, causes painful muscle spasms, seizures and leaves sufferers struggling to move due to the pain.
Now, two patients have been inspired to share their own experience with the disease, describing how it nearly drove them to suicide and left them barely able to move for days.
Carrie Robinette, 45, from San Diego (left), described how SPS left her struggling with seizures that can last up to an hour. Corwyn Wilkey, 44, from Alaska, said the condition led to the breakup of his marriage.
Carrie Robinette, 45, of San Diego, California, revealed she had been sick for years before doctors finally diagnosed her condition, and is now virtually trapped in her house unable to move more than 50 feet without assistance.
She suffers from spasms that can last up to an hour and says it is often not even worth going to the hospital because doctors do not know how to help her.
Corwyn Wilkey, 44, of Alaska, said the first signs of his condition were the same as Celine Dion’s: throat spasms.
She described the diagnosis as a “death sentence” that had led to the breakdown of her marriage and cost her her home, her livelihood and, for a time, her children.
He also said this led him to attempt suicide because he felt like a “burden” on his family.
Celine Dion has once again shone a spotlight on the subject of stiff-neck syndrome after releasing her Amazon Prime series about her struggle last month. Pictured above, she is seen performing in 2019
“The truth is that I was always sick,” Robinette said. Fox News digital.
‘Even in high school, I had incredibly tight leg muscles and there were countless times I woke up crying with spasms in my calves.’
Doctors previously attributed her pain to asthma and allergies and diagnosed her with kidney problems.
But then in May of last year, after she also began experiencing spasms throughout her body, doctors ordered tests for SPS.
Doctors perform a variety of tests to detect the condition, including a blood test to detect antibodies that fight nerve cells and an electromyogram to measure electrical activity in the muscles.
Ms. Robinette describes her daily life as a struggle with no end in sight, because treatments, such as immunosuppressants, have not helped.
“This past year my family and I have been through some very difficult times,” she said.
“It is very painful to feel like you are in a medical crisis and yet know that even if you go to the hospital, no one will help you.”
He has now started to suffer from spasms that last up to an hour and says that on bad days he cannot move without the aid of a cane or walker.
In others, however, he says he can walk and move “almost normally,” although he still needs the assistance of a mobility chair to get more than 50 feet.
Ms. Robinette said that even when she wasn’t having spasms, she felt like her muscles were sore all day, every day.
SPS is an autoimmune neurological disorder believed to be caused by the body attacking its own nerve cells, triggering spasms.
Approximately two-thirds of patients are women, and most are between 30 and 60 years old.
Mr Wilkey said his condition began with spasms in his throat when he tried to sing, just like Celine Dion’s.
Warning signs include severe muscle stiffness and painful muscle spasms that can last up to an hour.
But in later stages, these spasms can become so severe that they tear tissue or break bones.
The disease is painful but not fatal. Patients can die from complications related to it, such as blood clots, wound infections due to immobility or, in extreme cases, spasms in the chest muscles that leave patients unable to breathe.
Patients tend to have other autoimmune diseases, such as type 1 diabetes, vitiligo and pernicious anemia, in which the body has difficulty absorbing vitamin B12, which is vital for red blood cell production.
Mr. Wilkey used to sing regularly in a local band and also worked at Alaska State Park as a media publications specialist.
Mr Wilkey is pictured above undergoing treatment for the disease. He said the diagnosis felt like a death sentence.
But her throat began to spasm several years ago when she tried to sing, similar to Celine Dion.
After a series of tests, she was finally diagnosed with SPS by the Mayo Clinic in 2021, but not before it took a toll on her life.
Mr Wilkey said the condition had turned him into a “raging monster” which eventually led to the breakdown of his marriage.
Although the condition is not thought to directly cause anger, the stress associated with it may well trigger the emotion.
Describing his diagnosis, Mr Wilkey said it felt “a lot like being given a death sentence”.
‘I became unable to function (due to the illness) and felt like a burden on my family, which led me to attempt suicide.
‘I mean… I lost everything: my marriage, all my money, my house and even my children for a while.’
He was hospitalized after his diagnosis and has been in intensive care. and pain rehabilitation programs.
He has also battled depression, post-traumatic stress disorder and complex regional pain syndrome, or when a patient has long-lasting pain and inflammation in the body.
On his battle today, he said: ‘The most prominent physical challenges are muscle stiffness and numbness, seizure-like muscle spasms, cognitive distortion and impairment, chronic pain and fatigue, post-traumatic stress disorder (PTSD), loss of coordination and fine motor control, headaches, joint pain, back pain, and the inability to coordinate my body the way I want.’
Medications patients receive include oral muscle relaxants or immunosuppressive medications to help control symptoms.
Researchers are also currently working on a new therapy, called KYV-101 and manufactured by Kyverna Therapeutics in San Francisco, which they say could “reset” the immune system, stopping it from attacking nerves.
Dr James Chung, medical director behind the treatment, said: “This approach could potentially offer a more targeted treatment that addresses the root cause of SPS rather than just managing the symptoms.”
The drug has recently been approved to enter phase two clinical trials, but it is likely to be at least a year away from being available to patients.
