(WJET/WFXP/YourErie.com) — Singer and songwriter Celine Dion announced to the public a medical diagnosis that has prevented her from performing lately.
Dion suffers from what is known as Stiff Person Syndrome (SPS) and describes it as severe and persistent muscle spasms.
The National Institutes of Health defines it as a neurological disorder with various features of auto immune diseases. People with SPS are said to be triggered by loud noises, which can bring on muscle tension and can cause people to collapse.
John Hopkins School of Medicine says the disease is quite rare, affecting only about one in one million people. While Stiff Person Syndrome is an extremely rare medical condition, there is at least one person locally who suffers from SPS.
Today we spoke with a local woman who has had a long and painful journey living with the syndrome.
Researchers at this moment are not quite sure what can cause this disorder, but Kylie Allen-Kulyk from Edinboro says that it has been a life-changing diagnosis.
22-year old Kylie Allen-Kulyk has suffered from Stiff Person Syndrome since childhood; a physical pain very few people in the world can understand.
She was diagnosed in 2018 after years of misdiagnosis and strife. However, she says that her condition was set further into motion after being involved in a car accident in 2017.
In 2018, Allen-Kulyk finally got help from Johns Hopkins Hospital.
She hospitalized for over 70 days because she was in so much pain and literally couldn’t move, her body was locked.
“It doesn’t just destroy the person that’s going through Stiff Person Syndrome, it doesn’t just destroy me, it destroys the family as well. It’s a lot for the family to go through,” said Kylie Allen-Kulyk, diagnosed with Stiff-Person Syndrome.
Before being diagnosed with Stiff Person Syndrome, Allen-Kulyk spent the majority of her childhood and teenage years in and out of the hospital.
She says her parents were constantly accused of over-hospitalizing their child and even accused the family of seeking medication for personal use.
But those allegations didn’t stop her mother from exhausting all options and finally getting answers.
She remains part of the Stiff Person Syndrome study in Baltimore.
On Celine Dion’s announcement, Kylie Allen-Kulyk says that her heart breaks for her because she knows what she is going through.
“My body would be, my foot would be turning in, my arms would be twisting, I would have no control over any of my muscles, my bones could break, my ligaments could tear. My parents, my grandma, people would literally have to hold my body so that my bones wouldn’t break,” said Allen-Kulyk. “My family has been there for me and by my side since day one. And my mom is my number one support system.”
Allen-Kulyk hopes Celine Dion’s diagnosis spurs awareness and more medical research for Stiff Person Syndrome to hopefully one day find a cure.