Céline has Stiff-Person Syndrome

[Peppercorn1991]

Celine is not done for sure. No matter the outcome she will find a way.

 

Kev x

[scielle]

Celine is not done for sure. No matter the outcome she will find a way.

 

Kev x

 

I agree. She loves what she does too much.

 

Doubtful anyone in the know would do that just for 15 seconds of fame in shady tabloid press.

 

I should have qualified that with

*Except Claudette

😉

[jolo87]

 

 

It means last chance of recovering. But Closer is not a scientist magazin

 

It probably means a stem cell transplant. That's the "last chance" treatment for SPS because it is so risky.

 

The intrathecal pump means she's probably taking Baclofen and either needs a higher dose or can't tolerate the side effects. But presumably it also means they found a medication that works and are no longer at the stage of trying out new meds to see what works and what doesn't.

[jolo87]

 

 

It means last chance of recovering. But Closer is not a scientist magazin

 

It probably means a stem cell transplant. That's the "last chance" treatment for SPS because it is so risky.

 

The intrathecal pump means she's probably taking Baclofen and either needs a higher dose or can't tolerate the side effects. But presumably it also means they found a medication that works and are no longer at the stage of trying out new meds to see what works and what doesn't.

[smw]

There are going to be more glorious moments in Celine’s career. Where she receives an outpouring of love.

[Graceland]

Well , Undertaker also wants to continue wrestling if he physically could but his body just cant , thats just facts......the last thing she should think about now is her career imo , health comes first Edited March 14, 2023 at 11:58 PM by Graceland

[Graceland]

What?? Sorry but that sounds weird... Who said that Celine "is a man"? Good Lord, I have NEVER ever heard that rumor, that's crazy!

 

I mean the woman has been pregnant 2 times & has 3 kids for God's sake, it is OBVIOUS AS HECK that Celine is a woman! A man could not get pregnant & give birth, so how could she be a man? Lol that's ridiculous, the stupid rumors people come up with, it makes no sense whatsoever!

 

Havent you seen Junior with Arnold , its possible

 

Why insult transgender people , theyre fans of CD too

[scielle]

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

“But the singer has been silent on social media since her announcement. Responding to a request for an update on Dion’s health, her publicist at Sony Music said: “Céline is completely focused on her health and has asked us to decline all interview requests for the foreseeable future. At this time, there are no further updates beyond what was shared publicly by Céline.”

[…]

Dion’s announcement caused a spike in media mentions of SPS in December, a phenomenon that organizations raising awareness of rare diseases are referring to as “the Céline Effect.”

[…]

Dr. Scott Newsome, director of the Johns Hopkins Stiff Person Syndrome Center in Baltimore and member of the medical advisory board of the SPSRF, said Dion’s revelation has prompted many more sufferers to contact his institution for help.”

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

“March 15 is International SPS Awareness Day and Zier says Dion's openness with her diagnosis has created more empathy toward an often invisible disease.

 

"For her to actually come out and say that she has it — she's so loved and credible — it almost gives it validity," Zier said. "Now, people actually take it seriously."

 

Hours after the video was posted, Zier said her foundation, the only one in the world, was flooded with requests to comment and help explain what SPS is. She also said there was an "uptick" in some donations coming in.“

 

Edited March 15, 2023 at 11:51 AM by scielle

[anewdayhascome]

I still don't get why she is not treater at Hopkins if this is THE place

[Davey84]

"For her to actually come out and say that she has it — she's so loved and credible — it almost gives it validity," Zier said. "Now, people actually take it seriously."

 

Hours after the video was posted, Zier said her foundation, the only one in the world, was flooded with requests to comment and help explain what SPS is. She also said there was an "uptick" in some donations coming in."

 

Never underestimate the power of Céline, on any field!!!

 

I still don't get why she is not treater at Hopkins if this is THE place

 

I guess because Denver is closer to home (Las Vegas) than Baltimore. Also, just because the Hopkins center might be the place, doesn't mean specialists from the Hopkins center can work for or together with (specialists of) the Denver center.

[Zofia]

For patients with SPS there are two places : Johns Hopkins in Baltimore and Mayo Clinic in Rochester, Minnesota - where she is supposed to get treated right now (without being sure because the source is always Closer…). Hopefully they qualify her for AHSCT (Autologous Hematopoietic Stem Cell Transplantation), for the moment the only hope for a remission in SPS. According to recent research, it gives more than 30% chance of full remission (for example: https://tiny.pl/w8g47). I hope it works for her...

[incognito]

Doctors can pick up treating privileges for special circumstances at different hospitals all the time.

[scielle]

Also, interestingly, a few weeks ago was Rare Disease Awareness Day. I was never aware of its existence before but this year it kept popping up on my news and socials, probably due to Céline.

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

 

“NORD’s motto is, “Alone we are rare. Together we are strong.” The spotlight that Céline Dion has shined on rare diseases offers promise that together we can gain a greater understanding of the devastating impact of rare diseases and can let those with rare diseases know they are not alone.”

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

 

 

 

[comingback]

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

"But the singer has been silent on social media since her announcement. Responding to a request for an update on Dion's health, her publicist at Sony Music said: "Céline is completely focused on her health and has asked us to decline all interview requests for the foreseeable future. At this time, there are no further updates beyond what was shared publicly by Céline."

[…]

Dion's announcement caused a spike in media mentions of SPS in December, a phenomenon that organizations raising awareness of rare diseases are referring to as "the Céline Effect."

[…]

Dr. Scott Newsome, director of the Johns Hopkins Stiff Person Syndrome Center in Baltimore and member of the medical advisory board of the SPSRF, said Dion's revelation has prompted many more sufferers to contact his institution for help."

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

"March 15 is International SPS Awareness Day and Zier says Dion's openness with her diagnosis has created more empathy toward an often invisible disease.

 

"For her to actually come out and say that she has it — she's so loved and credible — it almost gives it validity," Zier said. "Now, people actually take it seriously."

 

Hours after the video was posted, Zier said her foundation, the only one in the world, was flooded with requests to comment and help explain what SPS is. She also said there was an "uptick" in some donations coming in."

 

Thanks, I did't know there is a special day for it. When do you guys think, we will get information about the Tour dates in August 2023 etc. ? I hope she is OK.

Edited March 15, 2023 at 03:17 PM by comingback

[Nmj]

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

“But the singer has been silent on social media since her announcement. Responding to a request for an update on Dion’s health, her publicist at Sony Music said: “Céline is completely focused on her health and has asked us to decline all interview requests for the foreseeable future. At this time, there are no further updates beyond what was shared publicly by Céline.”

[…]

Dion’s announcement caused a spike in media mentions of SPS in December, a phenomenon that organizations raising awareness of rare diseases are referring to as “the Céline Effect.”

[…]

Dr. Scott Newsome, director of the Johns Hopkins Stiff Person Syndrome Center in Baltimore and member of the medical advisory board of the SPSRF, said Dion’s revelation has prompted many more sufferers to contact his institution for help.”

 

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

“March 15 is International SPS Awareness Day and Zier says Dion's openness with her diagnosis has created more empathy toward an often invisible disease.

 

"For her to actually come out and say that she has it — she's so loved and credible — it almost gives it validity," Zier said. "Now, people actually take it seriously."

 

Hours after the video was posted, Zier said her foundation, the only one in the world, was flooded with requests to comment and help explain what SPS is. She also said there was an "uptick" in some donations coming in.“

 

The quote from her publicist that states Celine will decline all interview requests for the “foreseeable future” seems very telling. I never had a doubt that she wouldn’t speak anytime soon but it seems like their choice of words is more or less saying, move on it won’t be anytime soon before she speaks… which almost certainly seems like now Celine will NOT take place in any promotion for the “Love Again” movie even in the virtual space.

[LukeD]

Thanks, I did't know there is a special day for it. When do you guys think, we will get information about the Tour dates in August 2023 etc. ? I hope she is OK.

I am expecting an update in late May or early June, so approximately 3 months before the tour is scheduled to take off. I think this is the sensible thing to do.

The quote from her publicist that states Celine will decline all interview requests for the “foreseeable future” seems very telling. I never had a doubt that she wouldn’t speak anytime soon but it seems like their choice of words is more or less saying, move on it won’t be anytime soon before she speaks… which almost certainly seems like now Celine will NOT take place in any promotion for the “Love Again” movie even in the virtual space.

And that is definitely good news as it shows that Celine is 100% focused on her treatments. Any involvement in promotion I would worry about. It would indicate some level of denial in relation to the seriousness of her condition. If anything, I am happy that her health is by far her #1 priority.

[LukeD]

On a side note, I wanted to thank everyone here for sharing updates and showing so much interest in Celine's well-being. It helps me deal with what's going on.

[smw]

On a side note, I wanted to thank everyone here for sharing updates and showing so much interest in Celine's well-being. It helps me deal with what's going on.

 

Agreed. It’s comforting to learn more about SPS. And that we’re all rooting for Celine’s health first and foremost.

[smw]

 

 

The quote from her publicist that states Celine will decline all interview requests for the “foreseeable future” seems very telling. I never had a doubt that she wouldn’t speak anytime soon but it seems like their choice of words is more or less saying, move on it won’t be anytime soon before she speaks… which almost certainly seems like now Celine will NOT take place in any promotion for the “Love Again” movie even in the virtual space.

 

I wouldn’t be surprised if she records at least a couple video messages. Of course, depending on how treatment is going. And then those video clips can be used by all the media outlets.

 

The marketing team for the film will hopefully get creative and come up with some good stuff.

 

Perhaps there will also be a new music video featuring clips from the film, etc. (Celine wouldn’t have to do anything.)

 

But I don’t think Celine will want to talk openly and in depth about how treatments are going, etc. for quite a while.

 

Knowing Celine, if she does record a video message, she might say something uplifting and positive about her current state (even if she’s still struggling). Very much like Olivia Newton-John always did over the years.

 

Edited March 15, 2023 at 07:16 PM by smw

[Zofia]

If she undergoes HSCT, it requires “conditioning” as before each transplant ("reset": usually a hard chemotherapy for 1-2 weeks to wipe out the immune system) and then several months (3-6) of carefulness before her new immune system starts working. That might explain her hospitalization (that SPS normally does not require) and her media silence just announced "for the foreseeable future" by publicist of Sony. Fingers crossed…

[Nmj]

If she undergoes HSCT, it requires “conditioning” as before each transplant ("reset": usually a hard chemotherapy for 1-2 weeks to wipe out the immune system) and then several months (3-6) of carefulness before her new immune system starts working. That might explain her hospitalization (that SPS normally does not require) and her media silence just announced "for the foreseeable future" by publicist of Sony. Fingers crossed…

 

What’s this treatment exactly? And chemotherapy? How serious is this procedure and what’s the risk/ reward ratio? This is what I’d like to know.

[jolo87]

 

 

What’s this treatment exactly? And chemotherapy? How serious is this procedure and what’s the risk/ reward ratio? This is what I’d like to know.

 

Think of it as an immune system transplant. They have to kill off the immune system first then implant new cells to grow a new one, hoping that after the procedure the new immune system will not produce the GAD antibodies or whatever it is that attacks the nerves in SPS.

 

From what I've read, it used to have a high mortality rate, but it's become safer in the past few years. Still, it's dangerous and requires really careful oversight to prevent secondary infection ... something like pneumonia or the flu, for example, could easily be fatal in the months after the procedure.

 

The reward is that a full remission from SPS is possible, so Celine could continue in some way with her career and recover her lost mobility and vocal ability.

 

Knowing Celine, she would worry more about her fans being worried for her than she would for herself, so I don't think we will hear anything about it until she has completed it and recovered 100%.

Edited March 16, 2023 at 07:51 AM by jolo87

[Zofia]

What’s this treatment exactly? And chemotherapy? How serious is this procedure and what’s the risk/ reward ratio? This is what I’d like to know.

Here you will find most of the answers presented in an easy to understand way: https://tiny.pl/w8749

Of course this therapy is much better known and better tested in the case of patients with multiple sclerosis. SPS is too rare to know in detail the risk, but the first results seem encouraging; we learn about it in recent scientific papers; for example: https://tiny.pl/w8744 , https://tiny.pl/w8742 , https://tiny.pl/w87nr . As far as I now, many patients with SPS would like to undergo this therapy, although it is hard, because at the moment it is their greatest hope - not only to gain an improvement, but a complete remission. Of course it requires the courage to accept the risk and all the inconveniences, but Céline does not lack courage as we all know (even her new biographer, Laurence Catinot-Crost, recently called her "terribly brave", “terriblement courageuse”)… Maybe she will pave the way for others.

[Ukrfan]

I read smewhere that these treatments were all done in Canada, which makes me wonder if she is there, and if she is indeed in Colorado, then why.

[Nmj]

 

 

Think of it as an immune system transplant. They have to kill off the immune system first then implant new cells to grow a new one, hoping that after the procedure the new immune system will not produce the GAD antibodies or whatever it is that attacks the nerves in SPS.

 

From what I've read, it used to have a high mortality rate, but it's become safer in the past few years. Still, it's dangerous and requires really careful oversight to prevent secondary infection ... something like pneumonia or the flu, for example, could easily be fatal in the months after the procedure.

 

The reward is that a full remission from SPS is possible, so Celine could continue in some way with her career and recover her lost mobility and vocal ability.

 

Knowing Celine, she would worry more about her fans being worried for her than she would for herself, so I don't think we will hear anything about it until she has completed it and recovered 100%.

 

Here you will find most of the answers presented in an easy to understand way: https://tiny.pl/w8749

Of course this therapy is much better known and better tested in the case of patients with multiple sclerosis. SPS is too rare to know in detail the risk, but the first results seem encouraging; we learn about it in recent scientific papers; for example: https://tiny.pl/w8744 , https://tiny.pl/w8742 , https://tiny.pl/w87nr . As far as I now, many patients with SPS would like to undergo this therapy, although it is hard, because at the moment it is their greatest hope - not only to gain an improvement, but a complete remission. Of course it requires the courage to accept the risk and all the inconveniences, but Céline does not lack courage as we all know (even her new biographer, Laurence Catinot-Crost, recently called her "terribly brave", “terriblement courageuse”)… Maybe she will pave the way for others.

 

Thanks for posting this and answering my questions, great reads.

 

I’m wondering if Celine will risk the mortality rate that could god forbid possibly take her away from her kids over the the approach of trying treatments that just help to control the disease. However if they opt to do it… I’m sure they may wait til after cold and flu season since the immune system will be so weak, something as minimal as the cold for the average person could be bad news in that case.

 

However I hope she can get her miracle.

[jolo87]

 

 

 

Thanks for posting this and answering my questions, great reads.

 

I’m wondering if Celine will risk the mortality rate that could god forbid possibly take her away from her kids over the the approach of trying treatments that just help to control the disease. However if they opt to do it… I’m sure they may wait til after cold and flu season since the immune system will be so weak, something as minimal as the cold for the average person could be bad news in that case.

 

However I hope she can get her miracle.

 

I think she will get a miracle too! I'm visualizing it in my head right now 😀 Maybe that's the best way we can help her atm. Just imagine her giving an interview in 6 months or a year talking about how she got her life back...

 

I think for her not being able to sing or perform is a huuuuge deal. It's not just about her quality of life, it's also her whole sense of self. So I think it's a risk she is willing to take.

[Nmj]

 

 

I think she will get a miracle too! I'm visualizing it in my head right now 😀 Maybe that's the best way we can help her atm. Just imagine her giving an interview in 6 months or a year talking about how she got her life back...

 

I think for her not being able to sing or perform is a huuuuge deal. It's not just about her quality of life, it's also her whole sense of self. So I think it's a risk she is willing to take.

 

I’m hoping for this! I hope she stays away long as she needs and comes back with minimal to no problems from SPS. I hope her diagnosis raises a ton of money for research and can help others with this terrible disease. I look forward to when she’s ready and we get that exclusive sit down interview where Celine feels comfortable enough to tell us her journey with SPS.

[scielle]

Javascript is not enabled OR refresh the page to view

Click here to view the Tweet

[GoldenLeaf]

chemotherapy? I highly doubt Celine would consider such agressive treatment considering it might leads to rapid and complete alopecia that can be either prolonged or even permanent.

[LukeD]

chemotherapy? I highly doubt Celine would consider such agressive treatment considering it might leads to rapid and complete alopecia that can be either prolonged or even permanent.

I would rather lose my hair than have to deal with muscle spams that affect my mobility.