Céline Dion has revealed that she is living with a rare neurological disorder called stiff person syndrome (SPS) in an emotional video posted to her Instagram account on 8 December. “I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now,” the 54-year-old singer said. “I’ve been dealing with problems with my health for a long time, and it’s been really difficult for me to face these challenges … We now know [SPS] is what’s been causing all of the spasms that I’ve been having.”
“Unfortunately the 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,” she continued. “I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me hope. I’m working hard with my support medicine therapist every day to build back my strength and my ability to perform again, but I have to admit it’s been a struggle.”
As a result of this diagnosis, Dion has rescheduled her European tour, set to begin in spring 2023, in order to “concentrate on my health on this moment”, saying: “I have hope that I’m on the road to recovery. This is my focus and I’m doing everything that I can to recuperate.”
“Diagnosis for some rare conditions takes too long: more than a third of people with a rare condition have to wait more than five years from first noticing symptoms to getting a diagnosis. This can be a challenging, sometimes lonely experience, and we know some people’s account of their conditions can be doubted by healthcare professionals,” said Louise Fish, CEO of Genetic Alliance UK.
“Céline Dion opening up about her diagnosis is really welcome as we know that contact with others can play a vital role in helping people to live well with their condition. A personal story like this one will hopefully enable more people to reach out and offer support to one another. Charities supporting people with rare conditions can often play a vital role in making these connections.”
“When a diagnosis finally arrives it is a tremendously powerful moment, providing answers, information about the future, contact with people with the same rare condition and hopefully options for care and treatment. Diagnosis is just the start of a life-long journey for people living with rare, genetic conditions and their families.”
SPS affects approximately one in 200,000 individuals in the UK, and is caused by the body’s immune system attacking itself. There is no cure for the disease, but it is treatable in most cases through chemical intervention and immune therapies.
Dion first spoke about her SPS symptoms in October 2021, when she postponed the beginning of her Las Vegas residency due to what she described as “severe and persistent” muscle spasms. “I’m heartbroken by this,” she said at the time. “My team and I have been working on our new show for the past eight months, and to not be able to open this November saddens me beyond words.”
