Celine Dion Continues to Seek Treatment for Rare Disease

Several months after revealing that she has been diagnosed with a rare neurological disease, Celine Dion’s sister Claudette Dion said that the singer is struggling to find the right treatment for her condition.

Dion’s sister said that despite working with “top researchers in the field,” there has been little improvement in her health. “We can’t find any medicine that works, but having hope is important,” said Claudette.

On Thursday (Dec. 8), the pop icon revealed that she was diagnosed with a rare and incurable neurological disease called Moersch-Woltman syndrome or stiff person syndrome. “I’ve been dealing with problems with my health for a long time,” said Dion in a video message posted to her Instagram account. “And it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through.”

[RELATED: Top 10 Songs by Celine Dion]

She continued, “Recently, I’ve been diagnosed with a very rare neurological condition called Stiff Person Syndrome, which affects something like one in a million people. While we’re still learning about this rare condition, we now know that this is what has been causing all of the spasms that I’ve 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’m used to.”

Shortly after Dion’s announcement in December, she was forced to cancel her Courage World Tour in May of 2023 to focus on her recovery.

[RELATED: The Meaning Behind “My Heart Will Go On” by Celine Dion]

Stiff person syndrome is a “rare, progressive neurological disorder” that impacts one in one million people. The condition can cause “stiff muscles in the trunk (torso), arms, and legs,” along with “sensitivity to noise, touch, and emotional distress, which can set off muscle spasms,” according to the National Institutes of Health.

“I honestly think that she mostly needs to rest,” said Claudette. Dion’s other sister Linda has also moved into the singer’s Las Vegas home as her caretaker. “She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”

Claudette added, “When I call her and she’s busy, I speak to my sister Linda who lives with her and she tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible.”

Photo: Alice Chiche /AFP via Getty Images