19 December 2023 , 12:06
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Celine Dion's older sister has announced the famous singer no longer has "control over her muscles" after it was revealed last year she was suffering from the neurological disorder known as stiff person syndrome.
The one-in-a-million incurable condition impacts the brain and spinal cord and causes the body to attack its own nerve cells leading to difficulties with muscle control. The legendary My Heart Will Go On singer, now 55, announced that she was forced to cancel her world tour last December after discovering she was diagnosed with the syndrome.
This week, her 74-year-old sister shared an update on the singer explaining that despite her tireless dedication to get better, she is now unable to control her muscle movement. Claudette told 7 Jours: "She's working hard, but she doesn't have control over her muscles. What breaks my heart is that she's always been disciplined."
But what is stiff person syndrome and how does it affect those unlucky enough to have it?
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Difficulty walking is a symptom of the syndrome (Getty Images)What is Stiff Person Syndrome?
It is an extremely rare autoimmune neurological disorder. Although scientists are still trying to understand the scope of it, it's believed it's caused by the body's immune system attacking healthy tissues.
Similar to other autoimmune conditions, it affects more women than men.
It commonly develops in people ages 40 to 50, but in rare cases, it can occur in children and older people as well. It is thought to affect one to two people in a million. Rather than being one specific disorder, it is a spectrum with a number of disorders falling under the umbrella term.
Most people with the syndrome have unique antibodies in their blood, which block enzymes that help make a crucial acid called gamma-aminobutyric acid (GABA).
The acid blocks certain nerve signals and if it doesn't function as expected it can cause nerve cells to act in incorrect ways.
What are the symptoms?
The most common symptom is painful muscle contractions and spasms that begin in the legs and back. The spasms can also affect the abdomen, and less often the upper trunk, arms, neck and face, according to
The spasms usually occur in episodes especially when the patient is surprised or startled. Sudden movements, cold temperatures and emotional stress can also set off spasms.
Not all patients experience the same symptoms. Depending on which part of the body is affected, the contractions can cause:
Difficulty walking
A stiff or rigid posture
'So fed up of tiresome pal flirting with my husband and always putting me down'
Unsteadiness and falling, which can lead to injuries
Shortness of breath if SPS affects chest muscles
Chronic pain
A woman suffering from a sore neck (Getty Images/Collection Mix: Subjects RF)Exaggerated curve (hyperlordosis) in the lower back due to muscle tightness which can lead to changes in the spine alignment
Anxiety and agoraphobia due to falls caused by spasms
Other less typical symptoms include eye movement problems that cause double vision, speech issues and lack of coordination.
Can it be treated?
Although there is no treatment that cures stiff person syndrome, working with a specialist and managing symptoms can make it easier to live with the condition.
Celine Dion's current situation
Sister Claudette continued: "She's always worked hard. Our mother always told her 'You're going to do it well, you're going to do it properly.'" And added: "It's true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don't know."
Her sibling explained that scientists have done minimal research to find a cure due to the progressive condition being so rare and impacting such a small portion of the population. She added that her family has not discovered any medicine that works for the Grammy award-winning singer, but they believe that "having hope is important."
She said that what has been an inspiring part of Celine's journey is the undying support from her devoted fans. Claudette shared that her family's charity the Fondation Maman Dion is still being constantly flooded with love and messages of hope for Celine. She said that they constantly receive phone calls sending their prayers for the singer in addition to other "messages, presents, and blessed crucifixes" all wishing for a safe recovery.