After managing undiagnosed symptoms of Stiff Person Syndrome for 17 years, Céline Dion looks back on her health journey through the lens of gratitude.
In PEOPLE’s latest cover story, the music superstar, 56, talks about progressive symptoms that began to manifest in the mid-2000s, including muscle spasms, difficulty breathing (and therefore singing) and, most severely, “crisis” episodes during which the whole body was locked up causing excruciating pain.
The first time she felt a cramp almost 20 years ago, she was in Germany on tour. “I was having breakfast and all of a sudden I started feeling cramping. My vocal practice made it worse,” recalls Dion, who gives fans a detailed look at her battle with SPS in an emotional new documentary, I am: Celine Dion (streaming globally June 25 on Prime Video).
Céline Dion Describes Scary Stiff Person Syndrome Symptoms 17 Years Back: ‘I Went Down, Down, Down’ (Exclusive)
Dion tried remedies ranging from steam showers to over-the-counter medications, and made appointments with an ear, nose and throat doctor and an eye doctor, all to no avail.
As her symptoms worsened, the “My Heart Will Go On” singer — beloved for her vocal precision and inimitable stage presence — was advised to take prescription drugs, including muscle relaxants like Valium.
“We started with two milligrams to see if it would help, then 2.5, then 3, then 15 and 50,” says Dion, noting that the drug started to wear off so quickly that at one point she took 90 milligrams of valium through the performance.
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Denise Truscello
“It could have been fatal. I didn’t check the level because I don’t know medicine. I thought it would be fine. It worked for a few days, a few weeks, and then it stopped working,” she says. “I didn’t understand that I could go to bed and stop breathing. And you learn – you learn through your mistakes.”
Today, Dion says she is “very, very happy and lucky” to be able to share her teachings with others.
“It’s very important to know… people who know me well enough, know that I didn’t take drugs just to do drugs, just to get high or high,” she emphasizes. “All my life I’ve been as professional as I can be, a disciplined, hard-working person who does what it takes to keep my voice in tip-top shape.”
Céline Dion recalls changing her songs as she sang through symptoms of Stiff Person Syndrome: ‘I did my best’
After being diagnosed with SPS in August 2022, Dion began a combination treatment plan that includes medication, immune therapy, vocal therapy and intensive physical rehabilitation five days a week.
“The good thing on my side is that I like doing all these things,” she says, grinning.
dr. Amanda Piquet, who serves as director of the autoimmune neurology program at the University of Colorado and the doctor who diagnosed Dion, calls the singer’s treatments “a full-time job.”
Having Dion speak publicly about her experience with the autoimmune and neurological disorder — often misdiagnosed as multiple sclerosis or Parkinson’s disease — will undoubtedly be life-changing for many others struggling with SPS, Piquet says.
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Dion performs in 2019.
Denise Truscello/Getty
Céline Dion reveals why she shared her diagnosis of Stiff Person Syndrome: ‘Lying to me, the burden was too much’
“We don’t have FDA-approved therapies for this disease. Even though we use these treatments, it’s all off-target,” explains Piquet, who estimates that 2 out of every 100,000 people struggle with SPS, for which there is currently no cure. “I’ve certainly had patients who have had clear improvements with these therapies, but we need clinical trials and research to tell us what really works best.”
As Piquet and her team continue to make research progress (an epidemiological study they recently submitted is currently under review), the doctor encourages patients to remain hopeful.
“Like many of my patients, she is incredibly motivated and determined,” Piquet says of Dion, who is fighting to get back on stage. “I think there is hope that patients can go back to doing the things they love.”
For all the details on Céline Dion’s Stiff Person Syndrome diagnosis and her fight to get back on stage, pick up the latest issue of PEOPLE magazine, on newsstands Friday, June 14.
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Source: HIS Education