Celine Dion announced her diagnosis last December. Credit: Instagram/@celinedion
Prior to the announcement, many fans wondered what exactly the rare condition was.
Luckily, Doctor Scott Newsome explained all – saying it can actually take years for someone to be diagnosed with Stiff Person Syndrome as it is so rare.
“It’s a devastating disease,” he said. “On average because of how rare it is, early on in the disease, it can mimic a lot of other conditions. It takes about seven years for people to get diagnosed – from symptom onset to actual diagnosis.
“It’s really when people start having more disability that comes to the doctor’s attention.”
Doctor Newsome explained some of the key symptoms of SPS include extreme muscle stiffness, rigidity and painful spasms.
“Someone will present to clinic with their axial torso and muscles quite rigid, they may have tightness in their legs… they get horrific spasms in really any muscle in the body. It’s quite painful,” the doctor continued.
“It seems to be adults,” the doctor then added in regards of who it affects. “Middle to later in years, and there tends to be a female predominance.”
“From the core immunological dysregulation that’s happening, we are a little bit behind the game in terms of understanding what’s going on in patients,” said the doctor, who worked at the department of neurology at John Hopkins at the time of the interview.
“It’s this overstimulation that occurs that leads to disability in SPS.”
He said the illness is treated with immunosuppressant medications, but other treatments like botox can be used to tackle the spasticity and tightness caused by SPS.