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Celine Dion’s Brave Stiff Person Syndrome Journey

Singing superstar Celine Dion has made a surprise appearance at the 2024 Grammy Awards after being diagnosed with the rare disease, stiff person syndrome.

The 55-year-old Canadian legend is battling the debilitating condition, which is extremely rare and affects only one person in a million.

Presenting the prestigious Album of the Year Award at the Grammys on 4th February, Dion was described as feeling “healthy and happy”, according to her stylist, Law Roach.

She had remained out of the public eye since December 2022, when she revealed to fans on Instagram that she had stiff person syndrome. A five-times Grammy Award winner herself, Dion had revealed how the disease affected “every aspect” of her day-to-day life.

Her most famous song, My Heart Will Go On, was the theme for the blockbuster 1997 film, Titanic. It was a number one chart hit in 25 countries and sold more than 18 million copies, making it one of the best-selling records of all time.

Sadly, stiff person syndrome has affected Dion’s vocal cords, and she has told fans she’s no longer able to sing the way she used to, but despite ill health, she has battled bravely on and looked radiant at the Grammys, when she presented the Album of the Year Award to Taylor Swift for Midnights.


What is stiff person syndrome?


Stiff person syndrome is an extremely rare and complex neurological disorder causing stiffness of the muscles, rigidity and painful spasms. Although an acquired progressive disease, the muscular rigidity can fluctuate, growing worse and then improving again.

Spasms can occur randomly, with no pattern, although they can also be triggered by factors such as sudden light, noise, exposure to cold or physical contact. As the disease progresses, it may become difficult to walk, and a stance with feet positioned wider than normal may be adopted to maintain balance.

Prone to falling, sufferers may experience spasms in their back and torso, that can lead to a rigid, stiff posture. Over time, curvature of the spine may occur due to the tightness of the muscles. If the disease affects the chest muscles, the person can feel short of breath, and be in chronic pain. The spasms and falls can also lead to mental health conditions, such as agoraphobia and anxiety, due to the constant fear of falling.

Less common conditions can include problems with eye movement, double vision, speech problems and a general lack of coordination. The symptoms of stiff person syndrome can appear in any order, although it can often begin with stiffness and cramps in the legs that worsen over a period of weeks or years.

Patients may suffer disrupted nights. Although the stiffness is relieved with a good slumber, the transition of rapid eye movement stages might lead to the loss of spasm relief, which causes the person to wake.


Stiff person syndrome causes


Research is ongoing, as scientists say they still have much to learn. They believe it may be an autoimmune disorder, with the body’s own immune system attacking healthy tissues. More women than men are affected, which is usually the case with autoimmune disorders.

People with the disease usually have anti-GAD65 antibodies in their blood that block glutamic acid decarboxylase enzymes. This can lead to some nerve signals being reduced or blocked, causing nerve cells to behave incorrectly. The nervous system enters a hyperexcitable state, leading to the spasms and psychological symptoms such as anxiety. Triggers for the spasms, such as being startled by a sudden noise or touch, are believed to occur due to this pathway disruption.

Research suggests stiff person syndrome can be linked to other autoimmune conditions including thyroid disorders, type 1 diabetes, vitiligo and pernicious anaemia. Cancer is found in less than 5% of cases. Usually lung or breast cancer, it is commonly diagnosed a few years after the symptoms of SPS begin. The cancers associated with the disease are known as paraneoplastic SPS.

The disease normally begins between the ages of 40 and 50, but it can occur in older adults and children in very rare cases.

Some experts believe it to be caused by a spectrum of disorders and hence it is more complex than originally thought.


Stiff person syndrome treatment


Various medical checks can diagnose SPS including blood tests, electromyography to evaluate the body’s muscle and nerve function, a lumbar puncture and imaging studies of the brain, nerves, spinal cord and other bodily structures.

If the diagnosis of SPS is confirmed, the doctor will create a customised treatment plan, with the aim of addressing the symptoms and preventing them from getting any worse. Some medications can help to reduce the stiffness, spasms and pain.


Celine Dion health condition


For Celine Dion, SPS has impacted every aspect of her personal and professional life. Announcing her diagnosis in December 2022, through an emotional Instagram video, she explained how she had been dealing with health problems for a long time.

She said the spasms impacted her daily life in every way, including causing problems when walking and preventing her from singing in her usual way. Telling fans, “All I know is singing,” Dion said she was having to cancel her world tour in May 2023 because of her illness. Saying she was “sorry to disappoint” everyone, the star revealed she was “working really hard” to build up her strength. However, she was unable to cope with the rigours of touring when she wasn’t feeling 100%.

Rather than postponing the shows, Dion felt it was best to cancel them altogether until she was certain she was ready to go back on stage. “It breaks my heart,” she admitted, before adding, “I’m not giving up!”

In 2023, the star’s team had shared a statement saying that they had “every hope that someday soon”, Dion would be able to perform on tour for fans at every city in Europe which had planned to host a concert on her world tour.

Fans were delighted at the unexpected Celine Dion health update at the recent Grammys, when she appeared to be in good spirits, despite her ongoing health issues. Seeing the award-winning vocalist on stage was enough to send social media sites into meltdown, especially with her stylist Roach’s Instagram post announcing, “We’re back!”

For more information on Celine Dion’s Brave Stiff Person Syndrome Journey talk to Kinderkey Healthcare Ltd

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