"We still don't know everything about this rare disease, but now we know that it is the cause of the muscle spasms I suffer from," explains Celine Dion in two videos in which she announces that she has been forced for medical reasons to cancel her scheduled tour for the 2023.
The Canadian star has reported suffering from Stiff Person Syndrome (SPR). It is a rare neurological condition characterized by progressive muscle stiffness and repeated episodes of painful muscle spasms.
According to Orphanet, the portal for rare diseases and orphan drugs (which are intended for a small group of patients and for this reason the pharmaceutical industry does not develop them widely), the peak incidence is around 45 years of age and the symptoms evolve for months or years. Celine Dion is 54 years old.
Muscle stiffness often fluctuates (meaning it gets worse and then better) and usually occurs at the same time as muscle spasms. These spasms can occur randomly or be triggered by a variety of external stimuli, including sudden noise or light physical contact.
If left untreated, RPS can cause difficulty walking and significantly impair a person's ability to perform routine daily tasks.
Although the exact cause of this syndrome is unknown, it is believed to be an autoimmune disease. The diagnosis is based essentially on clinical observation and is confirmed by the demonstration of certain characteristic antibodies and electromyographic abnormalities (an essential test of neurological diseases).
A CT scan of the spinal cord can help rule out mechanical causes, such as the presence of a herniated disc or a cyst in the spinal cord.
The first cases of the disease suffered by the artist were documented in 1956. Stiff person syndrome has been described in the medical literature under many different names. Originally described as stiff man syndrome, the name was changed because the disorder can affect people of any age and both genders. In fact, most people with the disease are women.
It is an extremely rare disease. According to the American organization NORD, which provides support for people with rare diseases, the incidence is around one person per million.
The treatment aims to alleviate the specific symptoms that occur in each individual, which often requires non-pharmacological approaches (stretching, thermotherapy, aquatherapy, massage therapy, acupuncture, etc.).
Certain medications can also be used to treat muscle stiffness and episodic spasms. For her part, Celine Dion has reported that "A great medical team works with me to help me get well, and my children also give me hope and support." The singer is the mother of three children: René-Charles (born in 2011) and the twins Eddy and Nelson, in 2010. They are the result of her marriage to René Angélil, who died in 2016.