But what is the rare disease that affects Celine Dion?
In a video posted today on her social networks, Celine Dion announced with emotion that she had Moersch-Woltman syndrome, or stiff-person syndrome (stiff-person syndrome < /em>in English). Métro spoke with a neurology professor to better understand this rare disease.
Stiff person syndrome, which affects only one in a million people, is an autoimmune disease discovered in the 1950s and whose causes are still unknown.
As its name suggests, this neurological disease causes muscle stiffness that can manifest itself in painful and sometimes very violent spasms, “even to the point of breaking bones”, explains Maiya Geddes, professor Assistant in the Department of Neurology and Neurosurgery at McGill University.
While this stiffness and spasms first affect the lower back and legs, the symptoms may spread to the neck and shoulders and eventually the pain may spread throughout most of the body.
Living with the syndrome
“In people who suffer from this syndrome, the nervous system becomes faulty, there is no longer a balance between excitation and inhibition of the muscles. Antibodies lower the inhibition and therefore cause the muscles to be over-stimulated”, explains Maiya Geddes.
So the serious problem with this disease is that the muscles lose their ability to relax. “They contract even when they shouldn’t,” summarizes the professor.
The onset of disease symptoms fluctuates over time. These – which can be triggered by stimuli such as a simple touch, noise, or emotional distress – can stretch on for years, with episodes that are calmer and others that are more violent.
In addition to the severe pain that people with this syndrome feel, “their very ability to move can be affected if the disease is not treated,” says Maiya Geddes. Daily activities then become much more difficult to maintain, as evidenced by Céline Dion who mentioned that in addition to affecting the use of her vocal cords, the disease alters the way she walks.
Unfortunately, there is currently no treatment that allows to fully recover from stiff person syndrome. Existing treatments, which may vary from one patient to another, are therefore more aimed at “relaxing the muscular system and calming the immune system”, explains Maiya Geddes.
Surrounded by a medical team, Celine Dion says she is learning little by little to regain her strength.