Stiff Person Syndrome: the Complex Disease Celine Dion is Battling

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A few months ago, in May of 2023, Céline Dion canceled more than forty scheduled concerts of her European tour, Courage World Tour, due to health problems.

The singer of «My Heart Will Go On» announced at the end of last year that she is suffering from stiff person syndrome, a disease that led her to postpone the European tour that was supposed to begin in February 2023. The artist rescheduled some concerts for 2024, while others were canceled outright. However, now all of them have been canceled.

     I’m so sorry to disappoint all of you once again… and even though it breaks my heart, it’s best that we cancel everything until I’m really ready to be back on stage… I’m not giving up… and I can’t wait to see you again!”

What is ‘Stiff Person Syndrome’?

According to the National Institute of Neurological Disorders, ‘Stiff person syndrome’ is defined by muscle rigidity and spasms, increased sensitivity to stimuli like sound and lights, and emotional distress that may trigger muscle spasms. Progressively, individuals with this condition might develop “hunched over postures,” as indicated by the NINDS. 

Initial manifestations of the syndrome usually involve muscle stiffness in the central region of the body –the trunk and abdomen– before progressing to stiffness and spasms affecting the legs and other muscle groups, as detailed by the Cleveland Clinic. 

The spasms caused by this disease can be strong enough to fracture bone, and any fall can lead to severe injury (as Dr. Emile Sami Moukheiber of the Stiff Person Syndrome Center at Johns Hopkins Medicine informed). 

In December 2022, Dion posted an Instagram video in which she detailed the syndrome and its far-reaching impact on ‘every facet’ of her daily life. She mentioned that it occasionally presents challenges while walking and not allowing her to use her vocal cords to sing the way she’s used to. Additionally, the syndrome is known to induce feelings of anxiety.

 

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Dr. Scott Newsome, director of the Stiff Person Syndrome Center, expressed that “Many patients, if not all, have an anxiety that is intrinsic to the disease and that anxiety actually feeds on the physical ailments of the disease that people can have.” 

What causes stiff person syndrome?

The precise origin of stiff person syndrome remains uncertain to researchers. However, it is believed to be an autoimmune disorder, characterized by the immune system targeting healthy cells without a clear cause. Moreover, this syndrome is exceptionally rare, affecting only 1 individual out of every 1 million people.