Last month, music legend Celine Dion gave fans a heartbreaking glimpse into her life with a once-in-a-million condition in her revealing documentary, I Am: Celine Dion.
Viewers were moved by the disturbing footage of her painful attacks, which left her frozen for an hour – a symptom of the incurable Stiff Person Syndrome, which Dion revealed she suffered from in December 2022.
The condition is caused by the immune system attacking the nerves, causing painful muscle spasms, seizures and making it difficult for the patient to move because of the pain.
Now, two patients are sharing their own experiences with the condition, describing how it nearly drove them to suicide and left them unable to move for days.
Carrie Robinette, 45, of San Diego (left), described how SPS has left her struggling with attacks that can last up to an hour. Corwyn Wilkey, 44, of Alaska, said the condition led to the breakup of his marriage
Carrie Robinette, 45, of San Diego, California, said she was sick for years before doctors finally diagnosed her condition. She is now mostly confined to her home and can only walk 50 feet without help.
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 don’t know how to help her.
Corwyn Wilkey, 44, from 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 had 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 he was a “burden” to 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
“I was honestly ‘always sick,’” Mrs. Robinette said Fox news digital.
‘When I was in high school, I already had incredibly stiff muscles in my legs. I would often wake up crying with cramps in my calves.’
Previously, doctors had attributed her pain to asthma and allergies and diagnosed her with kidney problems.
But in May last year, when she also started experiencing spasms throughout her body, doctors had her tested for SPS.
Doctors perform a variety of tests to diagnose the condition, including a blood test to detect antibodies that attack nerve cells and an electromyogram to measure electrical activity in the muscles.
Ms Robinette describes her daily life as a never-ending struggle because treatments, such as immunosuppressants, do not help.
“This past year, my family and I have really been put through the wringer,” she said.
“It is very distressing to feel like you are in a medical crisis but know that no one will help you, even if you go to the hospital.”
She now suffers from spasms that can last up to an hour, and on bad days she can’t move without the help of a cane or walker.
However, with other conditions, she says she can walk and move “almost normally,” although she still needs a wheelchair to travel further than 50 feet.
Ms. Robinette said that even when she wasn’t having spasms, it felt like her muscles were sore all day, every day
SPS is an autoimmune neurological disorder that is thought to occur when the body attacks its own nerve cells, causing 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, similar to Celine Dion
Warning signs include severe muscle stiffness and painful muscle spasms that can last up to an hour.
But at a later stage, the spasms can become so severe that tissue tears or bones break.
The condition is painful but not fatal. Patients can die from complications associated with it, such as blood clots, wound infections from immobility, or, in extreme cases, chest muscle spasms that prevent patients from breathing.
Patients often also suffer from 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 Alaska State Park as a media publications specialist.
Mr Wilkey is pictured above during treatment for the condition. He said the diagnosis felt like a death sentence
But a few years ago he suffered from throat spasms when he tried to sing, just like Celine Dion.
After a series of tests, he was finally diagnosed with SPS by the Mayo Clinic in 2021, but not before it had disrupted his life.
Mr Wilkey said the condition had turned him into a “raging monster”, ultimately leading to the breakdown of his marriage.
Although this condition is not thought to directly cause anger, the stress associated with it can certainly trigger the emotion.
Mr. Wilkey described his diagnosis this way: “It felt like I was given a death sentence.”
‘I could no longer function [because of the disease] and I felt like a burden to my family, which led to me attempting suicide.
“I mean… I lost everything – my marriage, all my money, my house, and even my children for a while.”
He was admitted to hospital after his diagnosis and underwent intensive therapy and pain rehabilitation programs.
He has also struggled with depression, PTSD and complex regional pain syndrome — or when a patient has long-term pain and inflammation in the body.
Speaking about his battle today, he said: ‘The main physical challenges are muscle stiffness and rigidity, muscle spasms that resemble seizures, cognitive distortion and decline, chronic pain and fatigue, PTSD, loss of coordination and fine motor skills, headaches, joint pain, back pain and the inability to coordinate my body the way I want to.’
Patients are prescribed medications, such as oral muscle relaxants or immunosuppressants, to control symptoms.
Researchers are also currently working on a new therapy, called KYV-101, developed by Kyverna Therapeutics in San Francisco, which they say could “reset” the immune system, preventing it from attacking the nerves.
Dr James Chung, the medical director behind the treatment, said: ‘This approach could potentially provide a more targeted treatment that addresses the cause of SPS rather than just treating the symptoms.’
The drug was recently approved for phase 2 clinical trials, but it will likely take at least another year before it is available to patients.
