Celine Dion joined Hoda Kotb for one NBC interview that aired Tuesday night, her first interview since being diagnosed with Stiff Person Syndrome (SPS). During the candid chat, the icon opened up about her struggles with Stiff-Person Syndrome and how she's determined to get back on stage.
A rare neurological condition, the autoimmune disease causes body stiffness and debilitating spasms, which have prevented Dion from performing for the past several years. When Dion postponed the opening of her Las Vegas residence in 2021, she cited “severe and persistent muscle spasms.” The singer then pushed back her 2022 tour to 2023 and shortly after announced that those European dates would also have to be postponed and revealed that she had been diagnosed with SPS.
Speaking to Kotb, Dion said she started with 20-milligram doses of Valium, which can help with the condition's painful muscle spasms and attacks. But as her body built up a tolerance to the powerful drug, Dion said she increased the dose to 90 milligrams.
“I honestly didn't know it could kill me,” she told Kotb. “90 milligrams of Valium can kill you, you can stop breathing. And at some point, the thing is, my body got used to it in my 20s and 30s and 40s until it went up. And I needed that, it relaxed my whole body.”
The Grammy winner was weaned off medication during the pandemic, “I stopped everything with the help of the doctors because when you taper off these medications you can, you can die too,” she said. “You can't stop everything.” However, without it, her symptoms worsened.
In an excerpt of Tuesday's interview released last week, Dion described singing with SPS as if “someone is strangling you.” She said she has experienced spasms in her neck, abdomen, spine and ribs, describing an experience that was so “severe” it left her with a broken rib.
During another segment of her NBC interview, Dion told Kotb that her decision to go public with her SPS diagnosis came after months of feeling like she was lying to fans by initially staying quiet about her condition. As the symptoms progressed, she said she “couldn't do this anymore,” adding, “Lying for me, the burden was too much. Lying to the people who got me to where I am today, I couldn't do it anymore.”
Determined, Dion has vowed to return to performing. “I'll be back on stage. Even if I have to crawl, even if I have to talk with my hands. I will,” she said during her NBC interview. “I'm Celine Dion,” she said. “Because today my voice will be heard for the first time, not just because I have to or because I have to. Because I want it and I miss it.”
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