Céline has Stiff-Person Syndrome

[incognito]

So I found this blog: https://thestiffman.com/

It's someone with SPS who has been documenting his recent treatment - chemo and both a stem cell and bone marrow transplant... Apparently it's a very experimental procedure and only something like 10 people have had it (in Denver & Seattle). You're supposed to quarantine for 100 afterwards because the immune system is basically starting at zero. I've only read a few of the entries and I think it's early days but he seems to be doing a bit better?

It's all so brutal though. I wonder if Celine would put herself through something this experimental.

 

Well she was in Colorado…maybe she was in Denver? 😐

Edited May 15, 2023 at 04:29 PM by incognito

[dawn]

Well she was in Colorado…maybe she was in Denver? ��

 

In Denver, yes.

Edited May 15, 2023 at 04:50 PM by dawn

[scielle]

Reading that blog actually gave me some hope.

It's an experimental treatment and a toss-up in terms of efficacy given lack of research, but something like this would probably be her best chance, right?

Who knows, maybe she's part of this trial, or doing something similarly invasive, which would explain inability to do so much as a video for LA release. (If she has to quarantine for an extensive period of time, and if she had to undergo intensive chemo with all the side effects that entails... would certainly explain her absence.)

[Nmj]

Reading that blog actually gave me some hope.

It's an experimental treatment and a toss-up in terms of efficacy given lack of research, but something like this would probably be her best chance, right?

Who knows, maybe she's part of this trial, or doing something similarly invasive, which would explain inability to do so much as a video for LA release. (If she has to quarantine for an extensive period of time, and if she had to undergo intensive chemo with all the side effects that entails... would certainly explain her absence.)

 

If the next update is just a presser instead of a video it probably almost certainly means she’s in some form of quarantine. I’m interested to see how she goes about the next update.

[chocolatechip15]

So I found this blog: https://thestiffman.com/

It's someone with SPS who has been documenting his recent treatment - chemo and both a stem cell and bone marrow transplant... Apparently it's a very experimental procedure and only something like 10 people have had it (in Denver & Seattle). You're supposed to quarantine for 100 afterwards because the immune system is basically starting at zero. I've only read a few of the entries and I think it's early days but he seems to be doing a bit better?

It's all so brutal though. I wonder if Celine would put herself through something this experimental.

 

FWIW (I am not a doctor, no medical expertise), while it may be an experimental treatment for SPS, I don’t think the treatment itself is totally experimental. I have a friend who is undergoing cancer treatment in Canada who had a similar procedure- basically resetting the entire immune system, so she needed to get all the childhood vaccines again because she has no immunity to anything.

[scielle]

But a stem cell and bone marrow transplant?

I know the former has been used for SPS for a decade or so (and MS as well, I believe), but this is the first I'm seeing it alongside a bone marrow transplant.

[Zofia]

But a stem cell and bone marrow transplant?

I know the former has been used for SPS for a decade or so (and MS as well, I believe), but this is the first I'm seeing it alongside a bone marrow transplant.

 

This brief article explains the difference between stem cell transplant and bone marrow transplant: https://blog.dana-farber.org/insight/2012/11/stem-cell-bone-marrow-transplant-difference/

 

As far as I know, in the treatment of patients with SPS was used unselected peripheral blood.

 

And here is a very recent article that reviews cases to determine the usefulness of HSCT for the treatment of autoimmune neurological diseases; chapter 5 is entirely devoted to the SPS: https://www.mdpi.com/2306-5354/10/2/176

 

We must of course remain cautious in our expectations, but the hope seems real…

[smw]

I watched the Michael J Fox documentary yesterday and man, it's all so sad.

And then reading this interview with Christina Applegate and her experience with MS: https://www.vanityfa...it-f-king-sucks

 

Ugh, it f*****g sucks to know Céline is likely going through something very similar. And how cruel that this disease is robbing her of something she so loves.

 

It was interesting to read that Christina is still pursuing voice over work -- even though her time on camera is done for now due to her disease.

Makes me hope that Celine will still record and release new music even if she doesn't regularly perform anymore.

Edited May 16, 2023 at 12:37 AM by smw

[Nmj]

 

 

It was interesting to read that Christina is still pursuing voice over work -- even though her time on camera is done for now due to her disease.

Makes me hope that Celine will still record and release new music even if she doesn't regularly perform anymore.

 

It’s a tough one tho, because Celine has always preferred the stage over the studio, whereas someone like Streisand is the opposite and will probably record until she can’t anymore. And that’s also us hoping the that the noise and such doesn’t bring on Spasms. So much is in the air right now.

[scielle]

It was interesting to read that Christina is still pursuing voice over work -- even though her time on camera is done for now due to her disease.

Makes me hope that Celine will still record and release new music even if she doesn't regularly perform anymore.

 

Selma Blair had a stem cell transplant for MS and has improved enough to participate in Dancing with the Stars... for a while, at least, until she had to withdraw because her body was taking too much of a beating. Different disease obviously and each person is a snowflake, but it seems some of these SPS treatments are modeled after MS treatments given higher incidence and more research. But, in the case of SPS, also seems these transplants may be reserved for the most serious of cases, perhaps due to lack of SPS-related research as to their safety.

 

I keep thinking of how much Celine has done over the years to raise awareness and funds for Cystic Fibrosis research. And then how she was one of the first high-profile women to speak openly about IVF when it was still very much a hush-hush subject. She has helped a lot of people already, and I have no doubt when she's ready, she'll speak openly about all this, too.

 

I'm also reminded of how, when RC was born, Rene said something to the effect of '"he'll be there to take care of you when I'm gone". Well, that time came sooner than we thought; I hope RC is taking good care of his mum.

[Angel2006]

I saw something in the news recently that was talking about this Google implant technology, where they essentially put google into your brain so that you're like a human computer. They said that this technology may help solve neuroglial disorders Like MS. I thought of Celine as soon as I heard this. Maybe if there isn't a full cure at any point through science, then technology can step in and be Celine's cure.

 

I hate to think that Celine could have Google in her brain, especially with all the references of her going into "Robot Mode" when she's performing onstage. Geez, I can just see the jokes that would come from that one. It's also a scary thought to think that the internet could be controlling anybody's brain but hey, if this could be her only cure, then why not. I would rather that then the thought of Celine in severe and life long spasms that take her away from everything she knows and loves in life.

[Nmj]

 

 

Selma Blair had a stem cell transplant for MS and has improved enough to participate in Dancing with the Stars... for a while, at least, until she had to withdraw because her body was taking too much of a beating. Different disease obviously and each person is a snowflake, but it seems some of these SPS treatments are modeled after MS treatments given higher incidence and more research. But, in the case of SPS, also seems these transplants may be reserved for the most serious of cases, perhaps due to lack of SPS-related research as to their safety.

 

I keep thinking of how much Celine has done over the years to raise awareness and funds for Cystic Fibrosis research. And then how she was one of the first high-profile women to speak openly about IVF when it was still very much a hush-hush subject. She has helped a lot of people already, and I have no doubt when she's ready, she'll speak openly about all this, too.

 

I'm also reminded of how, when RC was born, Rene said something to the effect of '"he'll be there to take care of you when I'm gone". Well, that time came sooner than we thought; I hope RC is taking good care of his mum.

 

May be trivial but RC has liked one of his moms Instagram posts recently, the post of Sam from Love Again, reading her biography…. He hasn’t liked one of her posts in a very very long time.

[smw]

 

 

May be trivial but RC has liked one of his moms Instagram posts recently, the post of Sam from Love Again, reading her biography…. He hasn’t liked one of her posts in a very very long time.

 

I always hoped RC would take on a bigger role in his mom’s career. Celine likes to keep things in the family. Maybe he will now that he’s older.

[Zofia]

But, in the case of SPS, also seems these transplants may be reserved for the most serious of cases, perhaps due to lack of SPS-related research as to their safety.

 

It seems that rather the first than the second… As for the benefit/risk ratio of the method applied to patients with SPS, the results seem really encouraging. The major problem is always rarity: these diseases are called “orphan” diseases because no one wants to deal with them; it is very difficult to conduct a search based on few occurrences and it is not profitable (although that sounds cruel) to invest in research. Lea Jabre Fayad, the author of the Instagram blog https://www.instagram.com/bent_not_broken_autoimmune/ , remarks : “It is not that it’s necessarily an incurable disease — it is a disease we haven’t had a chance to cure yet because there is (virtually) no research. A cure does not come cheap.”

 

I keep thinking of how much Celine has done over the years to raise awareness and funds for Cystic Fibrosis research. And then how she was one of the first high-profile women to speak openly about IVF when it was still very much a hush-hush subject. She has helped a lot of people already, and I have no doubt when she's ready, she'll speak openly about all this, too.

 

Perhaps the most well-known specialist in the media, Dr. Scott Newsome, does not hide his hope that the role of Céline will be comparable to that of Michael J. Fox in the future: “When Michael J. Fox had the courage, like Céline Dion, to come out and say he had this disease and was committed to pushing research forward, that was important in not only promoting awareness but, many years later, there was a trickle-down effect (of more funding for) research on that disease and there has been progress on treatment. They’ve made a lot of progress and I am hopeful we will see that too.” https://montrealgazette.com/news/local-news/celine-dion-has-ensured-stiff-person-syndrome-awareness-day-is-recognized

 

Given the rarity of the syndrome, the "Céline effect" may even prove to be crucial, more than in the case of Parkinson or MS. Last but not least, since in such ordeals what is most destructive is the absence of sense of meaning ("what's the point of what I'm going through?”), I hope that for her this awareness - that she embodies people's hope and can truly change their lives - one day will be a source of strength for herself.

[scielle]

I always hoped RC would take on a bigger role in his mom's career. Celine likes to keep things in the family. Maybe he will now that he's older.

 

I thought maybe he'd be graduating college this spring, but I guess not (if he's even in college? I guess we never really got any kind of confirmation).

Probably healthy for him to stay off of social media, at least publicly, because you know that anything he posts will end up in French tabloids, and nobody needs that for their mental health!

[scielle]

My good, this interview with Lauren McDermott is such a sad listen. So informative, but so scary.

On the one hand, I keep thinking (hoping…) Céline got diagnosed earlier than most so maybe, hopefully, they are able to treat her and stop diseases progression before it gets this bad. But on the other, we know she has had some of the symptoms mentioned here for years. And that’s just what we know from what she mentioned in passing, imagine how much more there must have been under the hood that she just powered through, as she’s known to do.

[Shaun]

Nobody, probably not even Celine herself, would’ve associated the symptoms she was experiencing with Stiff Person Syndrome. We’ve all “powered through” when we have aches and pains, it’s just what we do. Celine was no doubt doing the same. We know she rarely cancels shows unless she absolutely has to so I’ve no doubt she was frequently on stage in pain or medicated as she (understandably) thought she’d just get better and these things would pass like they do for most of us.

 

Of course we now know this is not the case and she’s literally experiencing the worse case scenario. We can only remain hopeful.

[AdrienneM]

I mean we’re talking about the woman who pinched a nerve in her back and went on stage the next night, wearing a full back brace, and sang her #ss off. If there’s one thing she has it’s fight and perseverance

[Nmj]

Celine really is bringing so much awareness to SPS….

 

Good Morning America is running a commercial for tomorrows show, May 18, with a picture of Celine and saying tomorrow “we dive into the disease that has struck Celine Dion, what is Stiff Person Syndrome, tomorrow on GMA”

 

Nothing new has come from Celine yet GMA is still talking about a super rare disorder. I hope this awareness continues!

[scielle]

Celine really is bringing so much awareness to SPS….

 

Good Morning America is running a commercial for tomorrows show, May 18, with a picture of Celine and saying tomorrow “we dive into the disease that has struck Celine Dion, what is Stiff Person Syndrome, tomorrow on GMA”

 

Nothing new has come from Celine yet GMA is still talking about a super rare disorder. I hope this awareness continues!

 

Oh wow, interesting timing. Are they trying to prepare us for something…?

[comingback]

Celine really is bringing so much awareness to SPS….

 

Good Morning America is running a commercial for tomorrows show, May 18, with a picture of Celine and saying tomorrow “we dive into the disease that has struck Celine Dion, what is Stiff Person Syndrome, tomorrow on GMA”

 

Nothing new has come from Celine yet GMA is still talking about a super rare disorder. I hope this awareness continues!

 

Interesting. Do you guys think that we will get a new statement/interview by Celine?

Edited May 17, 2023 at 04:38 PM by comingback

[scielle]

Interesting. Do you guys think that we will get a new statement/interview by Celine?

 

GMA has been known to break Céline news… (thinking of Ashes, for instance.)

[PuraVida]

imagine how much more there must have been under the hood that she just powered through, as she's known to do.

 

I came across a video of her training and rehearsing for the first Vegas residency, and my gosh she works hard. She was never afraid to get physical, dance, and train. Even in the video, you could tell she was working very hard not only physically, but mentally to try and learn all the new moves and techniques.

[PuraVida]

From a People Magazine profile of a teenager with SPS (although she also has a more complicated medical history):

Dr. Paolicchi began Dunk on an IV immunotherapy treatment known as Intravenous immunoglobulin — a therapy that Dunk continues today. Each month, she undergoes five days of IVIG —a treatment she may need the rest of her life, as there's no known cure for her condition. "If she doesn't get the therapy, she'll regress," Sutherland says.

Ayli's long-term prognosis is unknown, Dr. Paolicchi says "There are people who go into a form of remission and they do very well, and then their immune systems can be reactivated and they might need more therapy. That happened to Ayli. She responded well to steroids and then got another infection and really had worsening symptoms."

[scielle]

Celine really is bringing so much awareness to SPS….

 

Good Morning America is running a commercial for tomorrows show, May 18, with a picture of Celine and saying tomorrow “we dive into the disease that has struck Celine Dion, what is Stiff Person Syndrome, tomorrow on GMA”

 

Nothing new has come from Celine yet GMA is still talking about a super rare disorder. I hope this awareness continues!

Here it is:

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Edited May 18, 2023 at 11:28 AM by scielle

[scielle]

From a People Magazine profile of a teenager with SPS (although she also has a more complicated medical history):

 

Dr. Paolicchi began Dunk on an IV immunotherapy treatment known as Intravenous immunoglobulin — a therapy that Dunk continues today. Each month, she undergoes five days of IVIG —a treatment she may need the rest of her life, as there's no known cure for her condition. "If she doesn't get the therapy, she'll regress," Sutherland says.

 

Ayli's long-term prognosis is unknown, Dr. Paolicchi says "There are people who go into a form of remission and they do very well, and then their immune systems can be reactivated and they might need more therapy. That happened to Ayli. She responded well to steroids and then got another infection and really had worsening symptoms."

 

Yeah IVIG is a common treatment for this though from what I've read, only so effective, people develop tolerance over time, it has to be done every 2-4 weeks for the rest of one's life, and worse, in some cases it's ineffective for tackling symptoms but is habit-forming. And, apparently it knocks people out for a few days each time it's administered, so a physically draining process.

When I read that story yesterday I thought "oh, that sounds promising" but then realized this girl has only been on it for a few months.

 

That Denver doctor mentioned in the French tabloid piece does use it frequently for other diseases and has done some research on it (not SPS specific though), and it really just seems to (at best) lessen some symptoms.

 

Anyway, according to this (though source looks shady), Celine's team contacted this hospital research center in Montpellier. From what I can gather, they sequence antibodies?

https://www.midilibr...de-11202988.php

Edited May 18, 2023 at 11:28 AM by scielle

[valeriociarrocchi]

So, does anyone know if something new has been said on GMA this morning?

 

 

Sent from my iPhone using Tapatalk

[comingback]

. Edited May 18, 2023 at 03:33 PM by comingback

[comingback]

So what did they say on GMA? Was there sth. new about Celine?

[PuraVida]

When I read that story yesterday I thought "oh, that sounds promising" but then realized this girl has only been on it for a few months.

 

I think in some cases IVIG can lead to remission, but I think the article said the girl got an infection and her symptoms worsened again. I don't think her infection was related to SPS, though. So that's good news for others who go into SPS with less complications.

 

I hope Celine's immune system responds well to these therapies!