Celine Dion Battles Back: Stiff-Person Syndrome Won't Silence Her Voice

Celine Dion Battles Back Stiff-Person Syndrome Won't Silence Her Voice

Céline Dion is opening up about how stiff-person syndrome has affected her voice.

The five-time Grammy winner, 56, discussed her condition with NBC News' Hoda Kotb, marking her first televised interview about her health since announcing her diagnosis in 2022.

"It's like somebody is strangling you. It’s like somebody is pushing your larynx/pharynx," Dion said in a preview clip that aired on the Today show on Friday, June 7. She raised her voice to demonstrate, saying, "It was like talking like that, and you cannot go high or lower."

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"It gets into a spasm," Dion continued. "It started [in the throat]. [And I thought], 'No, OK, it’s gonna be fine.’ But it can also be the abdominal, can be in the spine, can be in the ribs."

She described the stiffness as sometimes feeling like it's locked into place.

Celine Dion Battles Back Stiff-Person Syndrome Won't Silence Her Voice

"It feels like, if I point my feet, they will stay in [that position]," explained the "Power of Love" singer. "Or, if I cook — because I love to cook — my fingers, my hands, will get in position. ... It’s cramping but it’s like in a position where you cannot unlock them."

"I have broken ribs at one point because sometimes when it's very severe, it can break," she added.

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In December 2022, Dion revealed she had been diagnosed with stiff-person syndrome, a rare and incurable neurological disease that causes debilitating muscle spasms and led to the cancellation of all her upcoming performances.

As she said at the time, "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."

"All I know is singing," she emphasized. "It's what I've done all my life. And it's what I love to do the most."

According to the Stiff Person Syndrome Foundation, the condition affects the central nervous system, particularly the brain and spinal cord.

Celine Dion Battles Back Stiff-Person Syndrome Won't Silence Her Voice

"Patients can be disabled, wheelchair-bound or bedridden, unable to work and care for themselves," they explain. The disease, which has autoimmune features, can include symptoms such as "hyper-rigidity, debilitating pain, chronic anxiety," and muscle spasms "so violent they can dislocate joints and even break bones."

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Last month, Kotb told co-host Jenna Bush Hager about her interview with Dion, stating, “[Céline] is now much better, but at some point, she almost died, which is something that she says."

“It was a scary time, and she’s dealing with this," Kotb added.

Dion's full interview with Kotb will air on Tuesday, June 11, at 10 p.m. ET on NBC. The Today show airs weekdays on the network starting at 7 a.m. ET.

The Quran - Chapter Ar-Rahman : 03 - 04

created humanity,

˹and˺ taught them speech.

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خَلَقَ الْإِنسَانَ عَلَّمَهُ الْبَيَانَ (He has created man. He has taught him [ how ] to express himself...55:4) Man's creation itself is a great boon of Allah and in the natural order of things he is first and foremost, so much so that even imparting the knowledge of the Qur'an, which is mentioned first, can only take place after his creation.

However, the bounty of Qur'anic knowledge is mentioned first, and the creation of man later, because the fundamental object of man's creation is to impart to him the knowledge of the Holy Qur'an, and for him to follow its guidance as stated elsewhere in the Qur'an: وَمَا خَلَقْتُ الْجِنَّ وَالْإِنسَ إِلَّا لِيَعْبُدُونِ (And I did not create the Jinns and the human beings except that they should worship Me.) [ 51:56] Surely, worship without Divine guidance is not possible.

The source of the Divine guidance is the Holy Qur'an. Thus Qur'anic knowledge is mentioned before man's creation.

Having created man, uncountable bounties are bestowed upon him. Of them, imparting the knowledge of expression has been mentioned especially, because the bounties necessary for man's growth and development, and his existence and survival like his food and water, his protection against cold and heat, his dwelling arrangements and so on are bounties in which all creatures are equal partners.

Among the bounties that are peculiar to human beings Knowledge of the Qur'an has been mentioned first, and it was followed by the knowledge of expressions, because deriving benefit from the Qur'an, and imparting it to others, is dependent on the knowledge of expression.

The word bayan ('how to express himself) comprehends all the means of communication created by Allah, like speech, writing etc. There are various languages and dialects of various nations in various regions of the world. All these are constituent parts of linguistic knowledge which is the practical interpretation or application of the verse عَلَّمَ آدَمَ الْأَسْمَاءَ كُلَّهَا (And He taught Adam (علیہ السلام) the names, all of them) [ 2:31] فَتَبَارَ‌كَ اللَّـهُ أَحْسَنُ الْخَالِقِينَ