Céline has Stiff-Person Syndrome

[PuraVida]

Celine fans have been interviewed by a pop culture podcast. I recommend giving it a listen...made me realise that fans haven't really had the chance to talk publicly or out loud about her illness and life as a Celine fan these days.

 

Two episodes -- I think they are always open for submissions for anyone who wants to reach out?

 

https://www.podbean.com/ew/pb-2wykb-14ce1d4

https://www.podbean.com/ew/pb-8i28d-14922d5

[tshlw]

Celine fans have been interviewed by a pop culture podcast. I recommend giving it a listen...made me realise that fans haven't really had the chance to talk publicly or out loud about her illness and life as a Celine fan these days.

 

Two episodes -- I think they are always open for submissions for anyone who wants to reach out?

 

https://www.podbean....b-2wykb-14ce1d4

https://www.podbean....b-8i28d-14922d5

 

Both are interesting interviews. I guess after watching and reading so many of her interviews and knowing Rene is gone, what is happening right now is not surprising. Team Celine as far as we know are just people at Sony not anyone that I see as close to Celine so not authorized at all to talk about her personal issues unless she wants. With not having a manager to speak on her behalf we really won't get much. She has been clear in the past she likes to do one thing at a time. So right now focusing on getting better and I am sure trying to come to terms with having this disease. And for her if nothing has changed since her last update I can see why not giving any new statements.

 

I believe what we have heard from her family is the best we can expect for now. I remember reading somewhere she is not one to complain, why took her so long to get her ear issue fixed. Seems she does not like to show weakness, especially after Rene passed. I am trying to take a page from Celine and think positive and live life to the fullest. One thing I hope more than anything is she has someone she can just let go with and not have to be so strong all time, since Rene has passed.

Edited October 16, 2023 at 01:58 PM by tshlw

[PuraVida]

The reason I shared the podcasts was to share Celine fans speaking about their experiences and emotions. And in this case they were also explaining to other fandoms what's been going on, since they might not be aware. There's some element of catharsis of hearing her being spoken about by fans, especially during this time.

 

The podcasts and my reason for sharing wasn't about the debate about updates/notifications -- which incidentally we are also having on the forum.

[tshlw]

The reason I shared the podcasts was to share Celine fans speaking about their experiences and emotions. And in this case they were also explaining to other fandoms what's been going on, since they might not be aware. There's some element of catharsis of hearing her being spoken about by fans, especially during this time.

 

The podcasts and my reason for sharing wasn't about the debate about updates/notifications -- which incidentally we are also having on the forum.

 

Gotacha. Think it helps me to logically look at things so as to not get to upset when we don't get updates. It also help to share our experiences of how we are dealing with it all. Knowing you are not alone with how you feel is some comfort in these uncertain times.

[Ukrfan]

Oh no 🙈

[Koolan]

Yes, that member has multiple accounts after further research. I've cleaned up the thread.

[Peppercorn1991]

Yes, that member has multiple accounts after further research. I've cleaned up the thread.

 

Koolan it is nice having you around and seeing you posting more regularly.

 

Kev

Edited October 24, 2023 at 01:45 PM by Peppercorn1991

[nuts2you]

I got to thinking today , that it will be 1 yr since she told us what has been going on,, Do any of you think that she will update us in the coming Months , . I cant help but to keep thinking about her and the kids on how they are doing/ coping with this as well

[joaofilho]

https://www.dailymail.co.uk/health/article-12671765/celine-dion-stiff-person-syndrome-it.html

 

[RosieBarron]

https://www.dailymail.co.uk/health/article-12671765/celine-dion-stiff-person-syndrome-it.html

 

 

Wouldn't place any faith in the Daily Mail.

[CelinesDIVO5]

https://www.dailymail.co.uk/health/article-12671765/celine-dion-stiff-person-syndrome-it.html

 

 

 

In stiff person syndrome, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulates motor neurons — the nerves that control movement.

 

If this part is true, I hope they’re working on a medicinal supplement for that specific protein. Which may have to be an injectable, but it could work to alleviate, NOT CURE, but make things manageable.

[Zofia]

Wouldn't place any faith in the Daily Mail.

 

The Daily Mail aside, how could the article mentioned be unreliable? It collects and quotes the testimonies of three patients who have themselves shared the story of their suffering on their social media, and it is quite rigorous in its presentation of current medical knowledge on this disease. In the case of orphan diseases, any article that raises public awareness is valuable, even if it's published by a tabloid.

[Zofia]

If this part is true, I hope they're working on a medicinal supplement for that specific protein. Which may have to be an injectable, but it could work to alleviate, NOT CURE, but make things manageable.

 

But this is already happening; for some patients, symptoms are manageable thanks to current treatments: benzodiazepines from the Valium group, Baclofen, Rituximab, IVIG, plasmapheresis or HSCT. The problem is that this is not always manageable for all SPS patients, and sometimes the relief is only temporary.

 

As far as this "specific protein" is concerned, namely GAD (Glutamic acid decarboxylase, an intracellular enzyme which catalyzes the conversion of glutamate to gamma aminobutyric acid, GABA - a major inhibitory neurotransmitter), things aren't so simple: firstly, the anti-GAD 65 antibody, although the best known, is not the only pathological antibody produced by the body of the SPS patient; secondly, in around 20-30% of patients, symptoms develop despite the absence of this antibody; thirdly, there is no simple correlation between anti-GAD 65 levels and symptom severity.

[PuraVida]

The Daily Mail aside, how could the article mentioned be unreliable? It collects and quotes the testimonies of three patients who have themselves shared the story of their suffering on their social media, and it is quite rigorous in its presentation of current medical knowledge on this disease. In the case of orphan diseases, any article that raises public awareness is valuable, even if it's published by a tabloid.

 

I agree. But the question becomes what % of people fall where on the conditions spectrum. There really doesn't seem to be any good version of this condition, but you'd expect for the most severe sufferers of SPS to be the ones who have TikTok videos go viral. But we can expect that Celine is at least going through something similar, and that's heartbreaking & horrible.

[RosieBarron]

 

 

The Daily Mail aside, how could the article mentioned be unreliable? It collects and quotes the testimonies of three patients who have themselves shared the story of their suffering on their social media, and it is quite rigorous in its presentation of current medical knowledge on this disease. In the case of orphan diseases, any article that raises public awareness is valuable, even if it's published by a tabloid.

 

I didn't say it was unreliable, but the Daily Mail is a right wing news outlet on the one hand and a on the other tends to publish sensationalised articles, especially in its showbiz columns. I just wouldn't read it. The story is designed to shock people, not tell a story.

[takeachance]

Im sure some day Celine will do an interview about all this, In the mean time ...........

 

"Ill be waiting for you"

[Zofia]

I agree. But the question becomes what % of people fall where on the conditions spectrum. There really doesn't seem to be any good version of this condition, but you'd expect for the most severe sufferers of SPS to be the ones who have TikTok videos go viral. But we can expect that Celine is at least going through something similar, and that's heartbreaking & horrible.

 

It's true that in the case of rare diseases, it's difficult even to access statistics (there are few cases, patients are scattered across different countries and continents)... It's frustrating to come up against the limits of our knowledge at every step.

 

As far as I know, from reading the testimonies of patients and their carers, the most bedridden are no longer able to manage their own social media. Those who remain active are at least able to fight to ensure that their lives are not entirely reduced to suffering. Fortunately, with SPS, remission is always possible, but it seems that most of those who have gone into remission must have gone through a period of hell beforehand (and that these periods last several years rather than months).

 

I keep repeating myself: Céline could have just said "I'm taking a break because of an illness I've been diagnosed with; I'm undergoing treatment; period". She had the courage to reveal the name of this illness, even though she was well aware that the epithets associated with to SPS - incurable, progressive, horrible - would begin to circulate in the media. We wish we could protect her from this ordeal - and all we can do is not look away from an experience that is now hers. All we can do is learn, share, show our support for other sufferers, make donations... and still wait. And hope.

 

I didn't say it was unreliable, but the Daily Mail is a right wing news outlet on the one hand and a on the other tends to publish sensationalised articles, especially in its showbiz columns. I just wouldn't read it. The story is designed to shock people, not tell a story.

 

Obviously, I'm not defending the garbage media or their "journalists", but there is a (large?) public that has no other sources. In the case of such a hopelessly unknown disease, it may sometimes be necessary to shock people into greater awareness and solidarity - in right-wing media, left-wing media, whatever. In the article mentioned, they have at least ensured that the medical commentary is rather reliable and not sensational.

Edited October 28, 2023 at 06:00 PM by Zofia

[LukeD]

I think we are going to get an update around December 8th, one year after she shared the news with us. I am actually expecting a video of hers.

[george_matei]

I think we are going to get an update around December 8th, one year after she shared the news with us. I am actually expecting a video of hers.

What made you think of that?

[LukeD]

What made you think of that?

I think I can get into the shoes of someone who is a disciplined over-achiever & people-pleaser like Celine. Because I am a bit like that myself. Discipline means that she needed to remain focused on one thing only - her health. This is why I predicted we would not get a video/appearance from her during the 'Love Again' film/album release. I also said several times that we would get an update about the Courage Tour around 3 months before it was supposed to kick off - and that's exactly what happened. This enabled them to take the space to check whether Celine would be ready to continue touring, and at the same time they informed the fans in a timely manner to cancel tickets, travel, accommodation arrangements and so on.

 

Celine has since kept quiet which means that she is still focused on addressing the issue. I am therefore feeling it is very sensible to make a public statement 1 year after her initial announcement. That way she sends across two messages: 1) She understands we are worried and therefore we will be getting updates 2) These updates will not be frequent at all because the issue is serious and demands her uninterrupted attention. Another reason why I am expecting an update from Celine around December is because last year we got another video of hers wishing us Merry Christmas. This is the last we've seen from her actually. The fact that they shared this clip with us kind of makes me expect some engagement with social media during the Christmas break.

 

So this is my prediction, if I get this one right as well, it will be a 3/3 score.

[PuraVida]

Fortunately, with SPS, remission is always possible, but it seems that most of those who have gone into remission must have gone through a period of hell beforehand (and that these periods last several years rather than months).

 

This woman's testimonial has come into my mind recently. But watching it back she has the 'paraneoplastic' variant of the condition, and it wasn't remission as such...just the bi-monthly infusion cocktail she gets seems to be enough to maintain functioning health for her.

 

[scielle]

I hope she’s carving pumpkins and dressing up with the twins.

 

We miss you, Céline.

[No1IrishFan]

I think I can get into the shoes of someone who is a disciplined over-achiever & people-pleaser like Celine. Because I am a bit like that myself. Discipline means that she needed to remain focused on one thing only - her health. This is why I predicted we would not get a video/appearance from her during the 'Love Again' film/album release. I also said several times that we would get an update about the Courage Tour around 3 months before it was supposed to kick off - and that's exactly what happened. This enabled them to take the space to check whether Celine would be ready to continue touring, and at the same time they informed the fans in a timely manner to cancel tickets, travel, accommodation arrangements and so on.

 

Celine has since kept quiet which means that she is still focused on addressing the issue. I am therefore feeling it is very sensible to make a public statement 1 year after her initial announcement. That way she sends across two messages: 1) She understands we are worried and therefore we will be getting updates 2) These updates will not be frequent at all because the issue is serious and demands her uninterrupted attention. Another reason why I am expecting an update from Celine around December is because last year we got another video of hers wishing us Merry Christmas. This is the last we've seen from her actually. The fact that they shared this clip with us kind of makes me expect some engagement with social media during the Christmas break.

 

So this is my prediction, if I get this one right as well, it will be a 3/3 score.

 

I fully expect December to come and go with no update. Personally I believe the only reason she made the announcement and told the world was because of the tour cancellation. If that wasn’t a factor I’m not sure she would have made a video and shared the news. She’s been so closed since Rene passed.

 

I would love to be wrong but I don’t think C is going to update unless it’s a positive update. If the situation hasn’t changed there will be silence.

[Shaun]

If - and I do realise it’s a big IF - Céline ever does return to performing it does intrigue me what form it would take. Would she do a big TV special? A one off stadium show? A short residency at Resorts World? Or a full on world tour?

[comingback]

If - and I do realise it’s a big IF - Céline ever does return to performing it does intrigue me what form it would take. Would she do a big TV special? A one off stadium show? A short residency at Resorts World? Or a full on world tour?

 

Maybe a big TV Special from Vegas. But I can't imagine a residency or World Tour. We will see.

Edited October 29, 2023 at 08:44 AM by comingback

[ordinary fan]

Maybe a big TV Special from Vegas. But I can't imagine a residency or World Tour. We will see.

I could actually see some kind of residency happening when she's ready to come back. Like the plans we saw for the canceled vegas show, a few shows, long breaks between them. We'll see

[george_matei]

I could actually see some kind of residency happening when she's ready to come back. Like the plans we saw for the canceled vegas show, a few shows, long breaks between them. We'll see

Honestly, with SPS, I don't see her ever come back on stage doing shows. It is so dangerous for her to do that. Yes, it is very sad, but most probably.

[Nmj]

Celine Dion attends Las Vegas Golden Knight game with her family yesterday October 30th, 2023.

 

She looks radiant as she deals with SPS in her first public appearance in a year.

 

https://www.instagram.com/p/CzEQuVJMgQ3/?igshid=MzRlODBiNWFlZA==

 

https://www.instagram.com/p/CzEQuVJMgQ3/?igshid=MTc4MmM1YmI2Ng==

Edited October 31, 2023 at 03:54 PM by Nmj

[rfkavanagh]

Celine Dion attends Las Vegas Golden Knight game with her family yesterday October 30th, 2023.

 

She looks radiant as she deals with SPS in her first public appearance in a year.

 

https://www.instagra...zRlODBiNWFlZA==

 

https://www.instagra...Tc4MmM1YmI2Ng==

 

Well that's an unexpected, pleasant surprise! She looks great!

[Rossum89]

Happy to see her looking well. So, so good to see her.