Friday, June 28, 2024 -Céline Dion has donated $2 million to help find the cure for stiff-person syndrome while battling the rare condition.
The Canadian singer, 56, made the huge
donation to the University of Colorado Anschutz Medical Campus, where
Dr. Amanda Piquet is treating her for the rare condition.
'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,' she explained.
Dr Piquet, who is leading the way on SPS
research, explained that the condition can 'take years to get a diagnosis,'
adding: 'The average time frame is seven years.'
She also recalled how Dion 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,' said Dr Piquet.
'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.
Dion previously praised Dr. Piquet at
the world premiere of her new documentary I Am: Celine Dion. 'She has
replaced my fear with hope,' she said.
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.
She announced her SPS diagnosis
in December 2022 after 'dealing with problems with my health for a long time,'
writing: '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,' she continued.
Dion 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 on Today.
'Lying to the people who got me to where I
am today, I could not do it anymore,' added Dion. 'I could not do this
anymore.'
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