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‘It's A Hard Disease': Celine Dion's Doctor Seeks More Research About Stiff-Person Syndrome
Celena Dion is currently awaiting the upcoming documentary titled I Am: Céline Dion set to premiere on June 25 on Amazon Prime Video chronicling her musical journey and her struggles with SPS.
Candian singer Celine Dion, popular as the Queen of Power Ballads, was recently diagnosed with a rare autoimmune neurological disorder called stiff-person syndrome. Her doctor Amanda Piquet has shared details about the incurable disease seeking more research on its awareness and treatment.
Over the last several years, the 56-year-old has offered a glimpse into her struggles with suffering from the disease and even simultaneously working. Ahead of the upcoming documentary titled I Am: Céline Dion premiering on June 25 on Amazon Prime Video, let’s take a look at what Dion has been going through and what her doctor has to say about the disease still widely unknown in the medical world itself.
What is Stiff-person syndrome?
As per the US government’s official website, SPS is an incurable, “rare, progressive neurological disorder.” The symptoms of the disease include stiff muscles in the torso area, arms, and legs and higher sensitivity to noise, touch, and emotional distress which can trigger muscle spasms. It basically affects the brain and spinal cord and is linked to painful muscle contractions that can get so bad that patients lose their ability to move or speak, double vision, and slurred speech.
A blood test that quantifies the amount of glutamic acid decarboxylase (GAD) antibodies can provide a conclusive diagnosis of the SPS. The majority of SPS patients have raised (higher) GAD antibody levels. Titers of antibodies are crucial for the diagnosis of SPS. A titer is a diagnostic test used in laboratories to determine the quantity and presence of antibodies in blood. It is often misdiagnosed for Parkinson’s disease or multiple sclerosis.
“It's a hard disease to diagnose because it's not well recognized by the medical system,” said Dr Picquet adding it is common to be diagnosed in your 50s. “This is a rare disease, and it can look a lot like other things. So at first when the muscle spasms start, they tend to just come and go and it can mimic many other neurologic diseases,” said Dion’s doctor Picquet.
What does Celine Dion’s doctor say regarding her SPS?
As Dr Picquet told People magazine, “You can think about it as putting the brakes on the nervous system. So if you're not able to put the brakes on, you have symptoms of hyper excitability, muscle spasms.” The five-time Grammy winner battled foot and throat spasms. She experienced breathing and walking difficulties, visual problems, and, worst of all, "crisis" episodes in which she was in tremendous pain and her body went stiff like a board.
Comparing it to experiencing a charley horse in the calf, Dr Picquet explained that it is the same pain and stiffness in all the muscles of the body and “it can last minutes to hours.” She added that it tends to be a progressive disease that initially shows minor symptoms but spreads over time and increases in levels of severity which is the reason behind Dion’s 17-year delay in noticing the symptoms and getting diagnosed.
Dr Picquet further mentioned that Dion's speaking about the disease and her struggles publicly will be a game changer for many individuals dealing with SPS. She explained that there are no FDA-approved treatments for this disease and everything is off-label while using these treatments. “I've certainly had patients that have clear improvements with these therapies, but we need clinical trials and research to tell us what truly is best,” she said while asking patients to be optimistic.
What Celine Dion has to say about suffering from SPS?
Dion, best known for Titanic, Deadpool 2, and Beauty and the Beast, announced in December 2022 that she was diagnosed with stiff-person syndrome in August 2022 following which she returned to the recording studio. However, moments later she began feeling spasms and headed to a physical therapy session.
Dion shared that her body was locked up, indicating that she was in severe agony when her care team gave her a nasal spray of diazepam during the SPS crisis episode. One of her team members said they are set to do a 9-1-1 if Dion goes back into a spasm. However, Dion said she feels embarrassed whenever something like this happens and doesn’t feel good about things getting out of control. “I don't know how to express it ... you don't like to not have control of yourself, you know?”
Dion further shared one of her crisis episodes that she was not ready for. “One part of the [SPS] condition is that overstimulation — whether it's happiness, whether it's sadness, whether there's sound, a surprise — can put me into a crisis. I was fine, and then something was triggered.”
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