Canadian superstar singer Celine Dion revealed on her Instagram account on Thursday December 8, that she is suffering from a “very rare neurological disorder”, which has forced her to postpone concerts on her “Courage World Tour” in Europe once again.
The disease, stiff-person syndrome, is a very rare neurological condition that causes progressive muscle stiffness as well as muscle spasms.
According to the US National Organization for Rare Disorders (NORD), the disorder affects about one in a million people.
Typically between the ages of 30 and 60, symptoms appear over a period of months or years and can either be stable in some individuals or gradually worsen in others.
According to NORD, the frequently excruciating muscle spasms can occur at random or be brought on by things like loud noises, light physical contact, stress, or circumstances requiring an elevated emotional response. They can last minutes or even hours and are frequently painful.
If the syndrome is untreated, it may result in walking difficulties that need the use of a wheelchair and have a substantial negative impact on a person’s capacity to perform everyday duties.
“While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms I’ve been having,” an emotional Dion said.
“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 added.
– Often misdiagnosed –
The condition was first identified in 1956, and was dubbed stiff-man syndrome. The name has since been changed — women in fact make up a majority of cases.
The exact cause remains unknown, though it is thought to be an autoimmune disorder that sometimes occurs alongside other autoimmune conditions.
Stiff-person syndrome can be diagnosed by testing for certain antibodies, for example GAD antibodies, and via an electromyography procedure which evaluates electrical activity in muscles.
However the syndrome is commonly misdiagnosed as a range of non-neurological conditions, according to US-based research published earlier this week.
“Improved diagnostic accuracy will reduce exposure to unnecessary treatments and health care costs,” the researchers wrote in the journal Neurology.
The only available treatments aim to manage the symptoms, for example commonly available drugs that lessen muscle stiffness and spasms.
Stretching, massage, acupuncture and other non-drug therapies are also often part of the mix, according to NORD.
“I have a great team of doctors working alongside me to help me get better,” Dion said on Instagram.
“I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again.”