Last month, music legend Celine Dion gave fans a heartbreaking glimpse into her life with a rare disease in her revealing documentary, I Am: Celine Dion.
Viewers were moved by disturbing scenes of her excruciating seizures that left her frozen for an hour – a symptom of the incurable stiff person syndrome, which Dion revealed she suffers from in December 2022.
The disease, triggered by an attack by the immune system on the nerves, causes painful muscle spasms, seizures and leaves sufferers unable to move due to pain.
Today, two patients have been inspired to share their own experiences with the disease, describing how it nearly drove them to suicide and left them barely able to move for days.
Carrie Robinette, 45, of San Diego (left), described how SPS left her with seizures that could last up to an hour. Corwyn Wilkey, 44, of Alaska, said the condition led to the breakdown of her marriage
Carrie Robinette, 45, of San Diego, California, revealed she was sick for years before doctors finally diagnosed her condition — and is now mostly stuck at home, unable to move more than 50 feet without help.
She suffers from spasms that can last up to an hour and says it’s often not even worth going to hospital because doctors don’t 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.
He described the diagnosis as a “death sentence” that led to the breakdown of his marriage and cost him his home, his livelihood and, for a time, his children.
He also said it drove him to attempt suicide because he felt like a “burden” on his family.
Celine Dion has brought stiff person syndrome back into the spotlight after releasing her Amazon Prime series about her struggle last month. She is pictured above performing in 2019
“Honestly, I was ‘always sick,’” Robinette told Fox News Digital.
“Even in high school, I had incredibly tight muscles in my legs, and there were many times when I would wake up crying with spasms in my calves.”
Doctors had previously attributed his pain to asthma and allergies and diagnosed him with kidney problems.
But in May last year, after she also began suffering from spasms throughout her body, doctors ordered tests for PSS.
Doctors perform a variety of tests to look for the disease, including a blood test to detect antibodies that fight nerve cells and electromyography to measure electrical activity in muscles.
Robinette describes her daily life as a struggle with no end in sight, as treatments, such as immunosuppressants, have not helped.
“The last year has really put a strain on my family and I,” she said.
“It’s very stressful to feel like you’re in a medical crisis and know that even if you go to the hospital, no one will help you.”
She has now started suffering from spasms that last up to an hour, and she says that on bad days she cannot move without the aid of a cane or walker.
On others, however, she says she can walk and move around “pretty much like normal” — although she still needs the assistance of a wheelchair to travel more than 50 feet.
Robinette said that even when she wasn’t experiencing spasms, she felt like her muscles were sore all day, every day.
SPS is an autoimmune neurological disorder thought to be caused by the body attacking its own nerve cells, triggering the spasms.
About 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 with Celine Dion.
Warning signs are 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.
This disease is painful but not fatal. Patients can die from complications related to this condition, such as blood clots, wound infections due to immobility, or, in extreme cases, chest muscle spasms that make it difficult for the patient to breathe.
People with the condition 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 essential for the production of red blood cells.
Mr. Wilkey sang regularly in a local band and also worked at the Alaska State Park as a media publications specialist.
Mr Wilkey is pictured above during his treatment. He said the diagnosis felt like a death sentence.
But his throat started to tighten several years ago when he tried to sing, like Celine Dion.
After a battery of tests, the Mayo Clinic finally diagnosed him with PSS in 2021, but not before it disrupted his life.
Mr Wilkey said the illness turned him into a “raging monster”, which ultimately led to the breakdown of his marriage.
Although this condition is not thought to directly cause anger, the stress associated with it may very well trigger this emotion.
Describing his diagnosis, Mr Wilkey said it felt like he had been given a “death sentence”.
“I became unable to function (due to the illness) and felt like a burden to my family, which led me to attempt suicide.
“I mean… I lost everything: my marriage, all my money, my house, even my children for a while.”
He was hospitalized after his diagnosis and underwent intensive therapy and pain rehabilitation programs.
He has also battled depression, post-traumatic stress disorder and complex regional pain syndrome, or when a patient suffers from persistent pain and inflammation in the body.
About his fight today, he said: “The most significant physical challenges are muscle stiffness and rigidity, epileptic-type muscle spasms, cognitive distortion and decline, chronic pain and fatigue, post-traumatic stress disorder, loss of coordination and fine motor control, headaches, joint pain, back pain and the inability to coordinate my body the way I want to.”
Medications given to patients include taking oral muscle relaxants or immunosuppressive drugs to help manage 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, preventing it from attacking nerves.
Dr James Chung, the chief medical officer behind the treatment, said: “This approach could potentially offer a more targeted treatment that addresses the root cause of PSS rather than simply managing the symptoms.”
The drug was recently approved to enter phase two clinical trials, but it will likely be at least another year before it is available to patients.