What is stiff person syndrome as Celine Dion shares her diagnosis with the world?

What is stiff person syndrome? Celine Dion has been forced to cancel her upcoming tour over the condition

What is stiff person syndrome
(Image credit: Getty)

Celine Dion has announced that she has cancelled her upcoming UK and European tour after she was diagnosed with an incurable health condition - but what exactly is stiff person syndrome?

The Canadian singer told her 5.2m Instagram followers that the rare neurological disorder that has features of an autoimmune disease, makes her muscles spasm uncontrollably and has left her with difficulties walking and singing, forcing her to pull out of her scheduled 2023 tour.

Celine, 54, explained, "I've been dealing with problems with my health for a long time. And it's been really difficult for me to face these challenges and to talk about everything that I've been going through. 

"Recently I've been diagnosed with a very rare neurological disorder called the stiff person syndrome which affects one in a million people. 

"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."

Celine, who is mum to son Rene, 21, and twins, Nelson and Eddy, 12, said, "Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal chords to sing the way I'm used to.

"It hurts me to tell you today that this means I won't be ready to restart my tour in Europe in February," she added.

And while fans come to terms with the news, many are want to learn more about the condition...

What is stiff person syndrome?

Stiff person syndrome is a rare neurological disorder that has features of an autoimmune disease. According to Cleveland Clinic, it can be characterised by fluctuating muscle rigidity in the trunk and limbs and also a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which in itself, can set off muscle spasms, according to the National Institute of Neurological Disorders and Stroke.

Other characteristics of the disorder include abnormal postures - often hunched over and stiffened and is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo and pernicious anemia. 

What are the first symptoms of stiff person syndrome?

The first symptoms of stiff person syndrome are stiffness of the trunk and abdomen. These areas of the body become stiff and enlarged. Symptoms include pain, muscle stiffness and aching discomfort.

While early stiffness may come and go, eventually it remains constant. And over time leg muscles and other muscles in your body - including the arms and face - become stiff too. Creating a hunched posture and in worse cases it can be hard to walk or move.

Painful spasms can also be triggered for no reason or after being exposed to a loud or unexpected noise.

The condition is usually diagnosed between the ages of 30 and 60 but it has been reported to occur in both children and older adults as well.

What is the life expectancy for stiff person syndrome?

The life expectancy for someone with Stiff Person Syndrome ranges from six to 28 years from the onset of the condition. The condition in babies is considered dangerous because they generally meet unfortunate and untimely death within a few months.

How fast does stiff person syndrome progress?

Stiff person syndrome progression can vary from person to person - symptoms usually develop over a period of months and remain stable for many years or rapidly worsen. Some sufferers can have their symptoms stabilised through medication.

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Selina Maycock
Senior Family Writer

Selina is a Senior Family Writer for GoodtoKnow and has more than 16 years years of experience. She specialises in royal family news, including the latest activities of Prince George, Charlotte, Louis, Archie and Lilibet. She also covers the latest government, health and charity advice for families. Selina graduated from the University of Sheffield in 2006 with a degree in Journalism, and gained her NCTJ and NCE qualifications. During her career, she’s also written for Woman, Woman's Own, Woman&Home, and Woman's Weekly as well as Heat magazine, Bang Showbiz - and the Scunthorpe Telegraph. When she's not covering family news, you can find her exploring new countryside walking routes, catching up with friends over good food, or making memories (including award-winning scarecrows!)