Céline has Stiff-Person Syndrome

[blueangel92]

Hi guys,

 

I really don't know what to say at the moment but feeling grave and heart-wrenching. I just saw this video about the latest health update of Celine.

 

 

She has tiff-person syndrome (SPS), a rare neurological disorder with features of an autoimmune disease. For those who don't know what this is, SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls (that's why she was previously diagnosed with spasm).

 

SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.

 

Guys, now I just pray the Lord to be with her and expect the most positive outcome. I dare not say anything unexpected. But I haven't imagined the day without her.

[Davey84]

You can read more about Stiff-Person syndrome here:

 

https://www.ninds.ni... muscle spasms.

 

The treatment and prognoses isn't great.

[Shaun]

She's 54 years old. So young.

 

The thought of her *never* performing again truly fills me with fear. Goodness knows how she's dealing with it.

 

Wishing her nothing but the best. Positive thoughts always!

[stone]

She’s mentally so strong that I hope she’s the one in a million to recover from this. 💗

[mirage]

Crazy right?!

Always thought she would be 80 and still doing high kicks on stage.

 

Let's hope she will get better, or get it under control so that she can enjoy daily life without any struggles.

 

And for us, let's hope she will still be able to sing and perform.

Though performing on the scale like she used to do, I can't see that happen.

 

Give her a chair, a piano and a microphone. Let's hope that is something that will work out in the end.

And that this amazing career gets the ending she deserves.

 

She's 54 years old. So young.

 

The thought of her *never* performing again truly fills me with fear. Goodness knows how she's dealing with it.

 

Wishing her nothing but the best. Positive thoughts always!

[jolo87]

I want to suggest that we brainstorm ways to collectively send her our love and support. What if everyone on the forum submitted a video, image or written message that could be compiled into a video message? Like virtual get well soon card?

[zuv]

Omg

This is so f sad ☹️

I’m googling Stiff-Person Syndrome Prognosis…. It’s not good, guys 😭 not good at all!

 

We should start a viral challenge like we did with MS a decade ago.

I know SPS is not as prevalent as MS… but it’s the Queen that we’re talking about.

 

She must be saved at all cost!!!

 

GOD SAVE THE QUEEN!

 

 

Edited December 8, 2022 at 01:03 PM by zuv

[ryba]

This video is heartbreaking. Poor Celine. I totally understand that her focus is to recover. I wonder what has caused this condition, probably the ongoing stress that she had all her life. She was constantly busy and under pressure. I’m glad she finally told us what is going on. Edited December 8, 2022 at 01:48 PM by ryba

[scielle]

This is sweet… from her former bodyguard - https://www.instagram.com/p/Cl6H79_AAnn/?igshid=YTY2NzY3YTc=

[PuraVida]

I wonder if she has had her genetic code scanned and that's how they matched her disease. And maybe gene therapy? Deep brain stimulation? Water fasting and veganism? Acupuncture?

 

I hope she tries everything (safe) under the sun. We can't let this thing beat Celine!

[lost84]

She’s mentally so strong that I hope she’s the one in a million to recover from this. 💗

 

You can‘t

[CelinesDIVO5]

The one thing that got me whole reading the description of this disorder was “emotional stress.” This poor woman. She never took the proper time to heal after such immense losses. She should have taken at least a year after Rene and her brother, and then more time after her mom passed. All she’s ever known is work. Absolutely heartbreaking to watch that video this morning.

[jolo87]

I wonder if she has had her genetic code scanned and that's how they matched her disease. And maybe gene therapy? Deep brain stimulation? Water fasting and veganism? Acupuncture?

 

I hope she tries everything (safe) under the sun. We can't let this thing beat Celine!

 

The probably diagnosed her by testing for GAD antibodies.

 

The only treatment that seems promising is a stem cell transplant procedure but it's dangerous and usually only done in life-threatening situations.

[PuraVida]

Thank goodness she has the money to fight this all the way. I hope they are planning for innovative or expensive solutions now, rather than just given her a standard treatment and waiting. Keep her safe, of course, but spend the cash!

[mirage]

Loud noises and emotional stress are triggers for those spasms.

I can imagine she has a lot of emotional stress.

 

The one thing that got me whole reading the description of this disorder was “emotional stress.” This poor woman. She never took the proper time to heal after such immense losses. She should have taken at least a year after Rene and her brother, and then more time after her mom passed. All she’s ever known is work. Absolutely heartbreaking to watch that video this morning.

[Davey84]

With the risk of sounding like a lunatic, this news quite threw me. And it feels like this is happening to a close family member. Céline is part of my life now for 26 years now, so more than half my life! I care deeply for her and all I want is for her to be healthy and happy. This is not something I would have ever considered happening in Céline's life and it shows once again you got to count your blessing each day, cos you never know how the next day will be. I know she gets the best treatment there is. But does she also get the best emotional treatment. It must be so hard for her right now to deal with this without René or her mom. And it's not fair to ask the same emotional support from your children. My heart really aches for her and I hope that whatever the outcome is, she will still have a happy and long life.

[blueangel92]

Crazy right?!

Always thought she would be 80 and still doing high kicks on stage.

 

Let's hope she will get better, or get it under control so that she can enjoy daily life without any struggles.

 

And for us, let's hope she will still be able to sing and perform.

Though performing on the scale like she used to do, I can't see that happen.

 

Give her a chair, a piano and a microphone. Let's hope that is something that will work out in the end.

And that this amazing career gets the ending she deserves.

 

yeah. I think the same. I always imagine the day she would be like Barbra Streisand or Patti Labelle now. Old but gold. And when that day comes, I will tell my children/grandchildren that I had my youth with this old woman

[blueangel92]

With the risk of sounding like a lunatic, this news quite threw me. And it feels like this is happening to a close family member. Céline is part of my life now for 26 years now, so more than half my life! I care deeply for her and all I want is for her to be healthy and happy. This is not something I would have ever considered happening in Céline's life and it shows once again you got to count your blessing each day, cos you never know how the next day will be. I know she gets the best treatment there is. But does she also get the best emotional treatment. It must be so hard for her right now to deal with this without René or her mom. And it's not fair to ask the same emotional support from your children. My heart really aches for her and I hope that whatever the outcome is, she will still have a happy and long life.

 

I feel the same bro. She has been part of my life since my childhood. The cassette of My Heart Will Go On. The first time I stayed up late till 3 a.m just to watch everything related to her. My taste of music now is tremendously influenced by her.

[artistman2007]

We want to support her what can we do how about planning for something big from fans all around the world

[Charles]

I first wanted to avoid watching her video announcement because I didn't want to be emotional but I couldn't help but watched both videos in English and French. I must say I am worried and sad... been a fan since 1996 and this hit me hard. Really puts things in perspective. All we can do now is to support her and stay positive. She will get better. Edited December 8, 2022 at 04:34 PM by Charles

[zuv]

Johns Hopkins Stiff Person Syndrome Center is one of the largest research centers in the world for that condition.

 

They've been following over a 100 patients over many years. On their website they mention that the treatment for SPS is an holistic approach … not just medication.

 

I'd love for her to try to go vegan… to be completely and fully on a whole food plant-based diet.

 

Started this in 2019, after many years of trying to cut down on animal proteins and reading about the benefits of a whole food plant-based diet. And it's after watching The Game Changers I made the switch and I don't regret it.

Edited December 8, 2022 at 04:29 PM by zuv

[incognito]

There have been people who have stopped displaying symptoms after treatment…even a short google session brought up some of those including people in her age bracket…so we should remain hopeful just like Céline is trying to be.

 

But this sucks. I’m so sad for her.

[Thomas]

Truly heart-breaking. It's not how I ever thought this would go, I'm struggling to comprehend what this means for her future and her family and what lies in store. It's terrifying for me, I dread to think what it's like for Celine.

 

At this point, if she can recover to the point she can lead a "normal" life, even if this rules out performing full time then fine. Absolutely fine by me. She has given us so much, for so long. All I want for her is to be happy with her kids. This is my only wish.

[incognito]

Truly heart-breaking. It's not how I ever thought this would go, I'm struggling to comprehend what this means for her future and her family and what lies in store. It's terrifying for me, I dread to think what it's like for Celine.

 

At this point, if she can recover to the point she can lead a "normal" life, even if this rules out performing full time then fine. Absolutely fine by me. She has given us so much, for so long. All I want for her is to be happy with her kids. This is my only wish.

 

Yes. First hope is for her to have the quality of life she deserves.

[PuraVida]

I was quite nervous when she was speaking, also full of emotion and anticipation. When she said "I've been dealing with health issues for a long time..." I sat forward. Not quite sure what I expected to follow after that, but it was not her identifying by name a very rare condition.

[GoldenLeaf]

delete Edited December 8, 2022 at 06:18 PM by Davey84
As said in the CWT thread: I am not allowing a vaccine discussion.

[CelinesDIVO5]

delete Edited December 8, 2022 at 06:18 PM by Davey84
As said in the CWT thread: I am not allowing a vaccine discussion.

[smw]

[PuraVida]

Anyone else notice the body gurgling noises during her message? I had headphones, so I thought it was my own throat or stomach making those noises. Might be typical for her, maybe when she's speaking?

[dawn]

Anyone else notice the body gurgling noises during her message? I had headphones, so I thought it was my own throat or stomach making those noises. Might be typical for her, maybe when she's speaking?

 

Yes, she was very nervous on the English message (I think she recorded it first), on the French message she was more relaxed.