I have the same disease as Celine Dion - the one in a million stiff person syndrome - this is the horrifying reality
Last month, musical legend Celine Dion gave fans a heartbreaking glimpse into her life with a one-in-a-million condition in her revealing documentary, I Am: Celine Dion.
Viewers were moved by disturbing scenes of her agonizing seizures that leave her frozen for up an hour — a symptom of the incurable Stiff Person Syndrome, which Dion revealed she was suffering in December 2022.
The condition, triggered by the immune system attacking nerves, causes painful muscle spasms, seizures and leaves sufferers struggling to move because of pain.
Now, two patients have been inspired to share their own experience with the condition, describing how it almost drove them to suicide and left them barely able to move for days on end.
Carrie Robinette, 45, from San Diego (left), described how SPS has left her struggling with seizures that can last up to an hour. Corwyn Wilkey, 44, and from Alaska, said the condition led to the breakdown of his marriage
Carrie Robinette, 45, from San Diego in California, revealed she had been sick for years before doctors finally diagnosed her condition — and is now mostly stuck at home unable to move further than 50 feet without aid.
She suffers spasms that can last up to an hour, and says it often isn't 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 had cost him his home, his livelihood and, for a time, his children.
He also said it had driven 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 on her struggle last month. She is pictured above performing in 2019
'I was honestly "always sick",' Ms Robinette told Fox News digital.
'Even as far back as high school, I had incredibly tight muscles in my legs, and there were countless times that I woke up crying with spasms in my calves.'
Doctors previously put her pain down to asthma and allergies and diagnosed her with kidney issues.
But then in May last year, after she also began to suffer full-body spasms, doctors ordered tests for SPS.
Doctors perform a myriad of tests to look for the condition, including a blood test to detect nerve cell-fighting antibodies and an electromyography to measure electrical activity in muscles.
Ms Robinette describes her daily life as a struggle with no end in sight — because treatments, like immunosuppresants, have not helped.
'This past year my family and I have really been put through the wringer,' she said.
'It takes a toll 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.'
She has now started to suffer from spasms that last for up to an hour, and she says on bad days she cannot move without the help of a cane or walker.
On others, however, she says she can walk and move 'almost like normal' — although she still needs the aid of a mobility chair to travel further than 50 feet.
Ms Robinette said that even when she wasn't facing spasms it 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 the patients are women, and most are aged between 30 and 60.
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 for up to an hour.
But in later stages, these spasms may become so bad that they tear tissues or break bones.
The condition is agonizing 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.
Sufferers tend to have other autoimmune conditions such as type 1 diabetes, vitiligo and pernicious anemia — where the body struggles to absorb vitamin B12 which is vital for red blood cell production.
Mr Wilkey used to sing regularly in a local band and was also working 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 his throat began to spasm several years ago when he tried to sing, similarly to Celine Dion.
After a battery of tests, in 2021 he was finally diagnosed with SPS by the Mayo Clinic — but not before it had disrupted his life.
Mr Wilkey said the condition had turned him into a 'raging monster' which ultimately led to the breakdown of his marriage.
While 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 'very much like receiving a death sentence'.
'I became unable to function [because of the disease] 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 home, and even my children for a time.'
He was hospitalized after his diagnosis and has gone through intensive therapy and pain rehabilitation programs.
He has also struggled with depression, PTSD 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 rigidity, seizure-like muscle spasms, cognitive distortion and decline, chronic pain and fatigue, PTSD, loss of coordination and fine motor control, headaches, joint pain, back pain, and inability to coordinate my body the way I want to.'
Medications for patients include taking oral muscle relaxers or immunosuppressant drugs to help manage the symptoms.
Researchers are also currently working on a new therapy, called KYV-101 and made by Kyverna Therapeutics in San Francisco, which they say could 'reset' the immune system — stopping 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 SPS rather than just managing symptoms.'
The drug has recently been approved to enter Phase Two Clinical trials but is likely still at least a year away from being available to patients.
