Canadian singer, Céline Dion has donated $2 million to assist in finding the cure for stiff-person syndrome while battling the rare condition.
The 56-year-old made the huge donation to the University of Colorado Anschutz Medical Campus, where Dr. Amanda Piquet is treating her for the rare condition.
She stated; ‘I am just incredibly honoured to receive this recognition to move the field forward with this research,’ said Dr Piquet, director of Autoimmune Neurology at CU Anschutz, in an interview with CBS News.
‘Stiff person syndrome is a progressive autoimmune neurological disorder that is characterized by two cardinal features – muscle spasms and stiffness’.
Dr Piquet, who is leading the way on SPS research, explained that the condition can ‘take years to get a diagnosis,’ noting further that: ‘The average time frame is seven years.’
The doctor also recalled how the prolific singer came into her care. ‘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. 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,‘ she added.
Earlier, Celine Dion lauded Dr. Piquet at the world premiere of her new documentary I Am: Celine Dion said. ‘She has replaced my fear with hope’.
The ‘My Heart Will Go On’ artist explored her journey with the diagnosis in the doc, which includes footage of a 10-minute seizure she suffered.
Dion revealed her SPS diagnosis in December 2022 after ‘dealing with problems with her health for a long time: ‘It has been really difficult for me to face my challenges and to talk about everything that I’ve been going through.
Recently, I’ve been diagnosed with a very rare neurological disorder called the stiff person syndrome, which affects one in a million people.
While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having. The singer continued.
She detailed the condition, ‘Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.’
This month, Dion explained why she decided to share her diagnosis after 17 years. ‘Lying for me was… The burden was too much,‘ she said.
Lying to the people who got me to where I am today, I could not do it anymore. I could not do this anymore. Dion added.
