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Stiff person syndrome is a rare condition, often misdiagnosed. This is what we know. : AlertScience



Celine Dion

Stiff person syndrome, which has forced Canadian superstar Celine Dion to postpone her European tour, is a very rare neurological condition that causes progressive muscle stiffness and muscle spasms.

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About one in a million people is estimated to have the condition, according to the US National Organization for Rare Disorders (NORD).

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Symptoms develop over a matter of months or years, usually between the ages of 30 and 60, and may remain stable in some cases or gradually worsen in others.

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The often painful muscle spasms last for minutes or even hours and can occur randomly or be triggered by events such as loud noises, light physical contact, stress or situations that require a heightened emotional response, NORD said.

If left untreated, the syndrome can cause problems walking, leading to the use of a wheelchair, and can significantly affect a person’s ability to perform daily tasks.

“While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having,” an emotional Dion said in an Instagram post Thursday in which she also postponed or canceled planned concerts. . through Europe.

“Unfortunately, the spasms affect every aspect of my daily life, sometimes making it difficult for me to walk and not allowing me to use my vocal cords to sing in the way I’m used to,” she added.

often misdiagnosed

The condition was first identified in 1956 and named stiff man syndrome. The name has since been changed: women, in fact, make up the majority of cases.

The exact cause is unknown, although it is believed to be an autoimmune disorder that sometimes occurs along with other autoimmune conditions.

Stiff person syndrome can be diagnosed by testing for certain antibodies, such as GAD-antibodies, and by an electromyography procedure that assesses electrical activity in the muscles.

However, the syndrome is commonly misdiagnosed as a variety of non-neurological conditions, according to US research published earlier this week.

“Improved diagnostic accuracy will reduce exposure to unnecessary treatment and healthcare costs,” the researchers wrote in the journal Neurology.

The only available treatments aim to control the symptoms, for example the commonly available drugs that decrease stiffness and muscle 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 by my side to help me get better,” Dion said on Instagram.

“I am working hard with my sports medicine therapist every day to get my strength back and my ability to perform again.”

© Agence France-Presse

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