I Am: Celine Dion,” the legendary singer’s new documentary, not only delves into her personal struggles but also sheds light on the rare condition known as Stiff Person Syndrome.
The documentary, released on June 25, explores a famous singer’s battle with the disease, offering fans and viewers an intimate look into their struggle.
In December 2022, Dion revealed publicly that she had been diagnosed with stiff-person syndrome, a rare neurological disease, in a video shared on her social media pages.
“I have been diagnosed with a very rare neurological disorder called the disease, which affects something like 1 in 1 million people,” the 56-year-old legendary singer said in the video.
What is stiff-person syndrome?
Dr. Leah Croll from Temple University in Philadelphia specializes in treating nervous system diseases like stiff-person syndrome.
She confirmed Dion’s statement that the disease is very rare.
“It occurs only in about one to two people per million,” Croll previously told “Good Morning America.”
Croll explained that stiff-person syndrome usually affects people aged 20-50 but can also appear in children and older adults, although uncommon.
She also pointed out that women are “two to three times” more likely to have the disease than men.
Croll suggested this might be due to the condition possibly having an immune system component and women generally having a higher risk for autoimmune diseases.
However, she clarified that this is a theory and not yet fully proven.
Stiff-person syndrome symptoms
In her video, Dion discussed the symptoms caused by stiff-person syndrome.
She described how the condition affects her daily life.
“While we are still learning about this rare condition, we now know this is what has been causing all of the spasms I have been having. Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I am used to,” she said.
Croll noted that stiff-person syndrome can cause stiffness in certain body parts, leading to instability, slower movements, and difficulty walking—symptoms Dion has encountered, along with challenges in singing.
The stiffness typically affects muscles in the trunk, neck, back, shoulders, and hips, though it can sometimes affect only one limb, such as a single leg.
Croll highlighted that stiffness in stiff-person syndrome significantly impairs normal movement, with walking difficulties being common.
She also noted that individuals with this condition may develop anxiety and phobias as a result of their physical symptoms.
Is there a treatment available for stiff-person syndrome?
Treatments exist to manage symptoms of this disease, but there is no cure for this chronic and progressive condition.
Medications are often prescribed initially to relax muscles; in some cases, therapies to modulate the immune system may be considered.
However, these treatments focus on lessening symptoms or slowing their progression, as there is currently no therapy specifically designed for the disease.
Due to its rarity, the disease has not received adequate research attention. Croll noted the absence of major clinical trials for the disease.
Meanwhile, Croll stated that doctors are unsure about the impact of the disease on life expectancy, noting that some patients have lived only a few years after diagnosis while others have lived for decades.
Croll pointed out that the condition is rare in the general population.
She suggested anyone worried about their symptoms should speak to their primary doctor, who can refer them to a neurologist for further evaluation.
“This is a very rare condition that most people should not worry about. But anyone who is experiencing symptoms in their muscles that are interfering with their ability to move normally would benefit from consultation with a neurologist to work that up,” Croll said.
Here’s Dr. Jennifer Ashton, ABC News chief medical correspondent, explaining what is stiff-person syndrome:
Discover more from My Positive Outlooks
Subscribe to get the latest posts sent to your email.