Celine Dion's donation to hospital in Colorado aims to help find cure for stiff person syndrome
Global superstar Celine Dion recently made a major donation to the University of Colorado Anschutz Medical Campus. The singer undergoes treatment at the Aurora hospital for a rare condition that halted her career and forced her to cancel her tour. Dion's $2 million gift is in support of her doctor who's leading the way on groundbreaking research to finding a cure for stiff person syndrome.
"I am just incredibly honored to receive this recognition to move the field forward with this research," Dr. Amanda Piquet, director of Autoimmune Neurology at CU Anschutz.
As the director of very few autoimmune neurology centers in the country, Dr. Piquet's work is pivotal, and her care is highly sought after. She explained to CBS Colorado's Kelly Werthmann that stiff person syndrome – or SPS – is incredibly hard to diagnose as very little is known about the disease.
"Stiff person syndrome is a progressive autoimmune neurological disorder that is characterized by two cardinal features – muscle spasms and stiffness," she said. "Often times patients go through a diagnostic odyssey where it can take years to get a diagnosis. The average time frame is seven years."
In Celine Dion's case, she suffered symptoms for more than a decade before she met Dr. Piquet two years ago and was finally diagnosed with SPS.
"She happened to find us, and it was a great relationship, and we worked really hard with her managing those symptoms, getting her on a good treatment pathway," Piquet said. "There are no FDA-approved therapies for this disease. We often use immune therapies, and symptomatic therapies to manage the disease. We will also do things like physical therapy, massage therapy, and in Celine's case vocal therapy to help manage the symptoms."
Dion is so incredibly grateful for Dr. Piquet's care and determination to find a cure for SPS, she made the multi-million donation to help advance research in Colorado. Dr. Piquet's studies have already shed light on the prevalence of the disease.
"This disease was originally thought of as one in a million, but we're looking at one to two people in 100,000," she said, noting SPS also disproportionately affects women.
Lynn Montgomery-Haga of Milliken, Colorado is among them.
"Stiff person syndrome for me started with lots of falling," she said.
Montgomery-Haga got her diagnosis from Dr. Piquet about four years ago, and her mobility has quickly declined.
"I went from walking to being in a wheelchair in a year," she said. "[SPS] created a problem in my brain so I now don't know where I am in space. I have to touch something, whether it be a wall or a person or my walker or hiking poles, in order to go anywhere."
She described the disease as very scary, and one that's hard to explain.
"Sometimes I say I have the Celine Dion disease," Montgomery-Haga said.
Other times she compares her symptoms to fainting goats.
"All of my muscles will stiffen up if I'm surprised too suddenly and I will fall over like a tree," she said.
Without a doubt, SPS is a difficult disease to live with let alone understand. Yet Dr. Piquet is confident Celine Dion's generous contribution to her research will make a world of difference.
"With Celine bringing public awareness to this disease, we're going to get there faster," the doctor said of finding a cure.
And, patients like Montgomery-Haga could not be more grateful for Dr. Piquet's compassion and determination.
"I have a ton of hope for my future," said Montgomery-Haga.
A similar sentiment was shared by the superstar herself during the world premiere of her new documentary "I Am: Celine Dion" which chronicles the singer's struggle with the debilitating disease and her care from Dr. Piquet.
"She has replaced my fear with hope," Dion said.
