Celine Dion has donated $2 million to a hospital researching Stiff Person Syndrome (SPS).
Celine Dion has donated $2 million to a hospital researching Stiff Person Syndrome
The 56-year-old singer was forced to stop performing following her 2022 diagnosis of the rare condition - a progressive neurological disorder that affects her muscles - and she has now pledged a huge sum in a bid to find a cure.
Celine made the donation to University of Colorado Anschutz Medical Campus, where she is being treated by Dr. Amanda Piquet.
Amanda, a director of Autoimmune Neurology at CU Anschutz, told CBS News: "I am just incredibly honoured to receive this recognition to move the field forward with this research.
"Stiff Person Syndrome is a progressive autoimmune neurological disorder that is characterized by two cardinal features – muscle spasms and stiffness.
"She [Celine] 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."
Celine has shone a light on the disease in recent documentary 'I Am: Celine Dion', which included footage of her suffering a torturous 10-minute seizure caused by SPS.
It showed the singer’s doctor conducting an evaluation as she had been experiencing spasms due to SPS, with sports medicine therapist Terrill Lobo saying: "Part of the disease is that as soon as you go into a contraction, sometimes ... the signal to release it, doesn’t understand, so it ends up just staying in a contracted position."
After he managed to get Celine to lie down on a massage table, the singer kept spasming, which Terrill warned could spark "a crisis".
The Grammy-winning star was then seen going into a full-blown seizure, as the doctor called in another member of his medical team to bring in Valium.
The 'My Heart Will Go On' hitmaker previously admitted she wants to "raise awareness" of SPS through the documentary.
She said: "This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.
"As the road to resuming my performing career continues, I have realised how much I have missed it, of being able to see my fans.
"During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis."
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