Céline Dion stands alone as a singer, a chart-topping ballad-belter who recorded some of the most iconic songs of all time, including “My Heart Will Go On” from the “Titanic” soundtrack. But, in 2022, Dion made headlines not for her one-in-a-million voice, but for a one-in-a-million diagnosis: a rare neurological disease called stiff-person syndrome (SPS).
Two years on, Dion has staged a “comeback” with the release of a documentary about her health struggles and a widely praised performance to close out the 2024 Paris Olympics opening ceremony last month. But with stiff-person syndrome, looks—and even the name of the disease itself—can be deceiving.
“I was so happy for her that she was able to do that,” Tara Zier, founder and CEO of the Stiff Person Syndrome Research Foundation (SPSRF), told Fierce Biotech in an interview. “Does that mean she’s cured? No. Does that mean she’s OK? No.”
A mild…
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