Céline Dion revealed in an emotional video posted to her Instagram account on Thursday that she’s been living with stiff-person syndrome, a rare and incurable neurological disorder that causes muscle spasms.
“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.”
Because of this neurological diagnosis, Céline Dion has had to reschedule her European tour, set to kick off 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.”
“It hurts me to tell you that I won’t be able to restart my tour in Europe in February,” Dion wrote in the caption of the post.
According to the Stiff Person Syndrome Foundation, the neurological disorder affects the central nervous system, specifically the brain and spinal cord. “Patients can be disabled, wheelchair-bound or bed-ridden, unable to work and care for themselves,” the foundation says, adding that the disease with autoimmune features may include symptoms like “hyper-rigidity, debilitating pain, chronic anxiety,” and muscle spasms “so violent they can dislocate joints and even break bones.”
“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.
“When a diagnosis finally arrives it is a tremendously powerful moment, providing answers, information about the future, contact 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.”
There is no cure for SPS, but it is treatable in most cases through chemical intervention and immune therapies.
“Take care of yourselves. Be well. I love you guys so much and I really hope I can see you again real soon,” she concluded, in tears. “Thank you.”
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