Céline has Stiff-Person Syndrome

[GoldenLeaf]

She looks so healthy and happy in that Oilers video!

Of course, people with SPS are often faced with “you don’t look disabled” comments when in reality they’re going through tremendous pain… we don’t know what’s going on underneath.

But the mere fact that she’s out in public more and more often and seemingly handling all the stimuli, that can only mean good things.

Yay!

Most SPS patients look like hell though, very tired and many of them have slouching posture which is not the case with Celine, my guess is she has a mild form of SPS or she is responding very well to treatments.

[Zofia]

Most SPS patients look like hell though, very tired and many of them have slouching posture which is not the case with Celine, my guess is she has a mild form of SPS or she is responding very well to treatments.

 

Except that most of the patients speaking out in the media have been suffering from SPS for many years; they are unlikely to be people one-two years after diagnosis.

 

If the symptoms "affected every aspect of her daily life," as she said in December 2022, and involved all the muscles, it's rather difficult to speak of a mild form of SPS. So her current form looks like a great response to treatment (we don't know what kind yet).

[homerton]

I watched the live in Boston concert. Taking chances tonight. What a beautiful concert. She looks amazing. Wish this Sps hadn’t come. But it has and she’s brave. What an icon! I think she’s had a lot of treatment. The chest looks like a port of some kind. I suspect she’s been very poorly. However she is making steps. Welcome back Celine. X

[ScotieG]

Taking Chances DVD looks great - but I just can’t get my head around the auto tune. It really bugs me on this release.

[Davey84]

Taking Chances DVD looks great - but I just can't get my head around the auto tune. It really bugs me on this release.

 

This is a very interesting video about the use of auto tune. In short my conclusion; yes it might help to get the notes where they 'belong', but the biggest negative impact of auto tune is that it takes away the emotion.

 

[PuraVida]

My theory is that Celine is recieving her treatments very soon before any schedule outing she makes. She probably did a fresh batch of IVIg (Intravenous Immunoglobin) therapy in order to be able to visit the Grammys, and she is well enough for however many days after that she can go to events like the hockey game.

 

Thanks to Zofia for keeping an eye on what the SPS community are saying. I didn't read all the posts yet, but I will just say that progress in the medical community takes time. New drugs, new trials, their approval etc. can take years, even with increased resources. And people, including us dedicated fans, who have studied up on SPS knows that Celine is not "cured" and that she may very well still be having bad days.

 

And increased visibility is needed for increased research funding. Just how much research funding has increased is the qeustion.

[Zofia]

My theory is that Celine is recieving her treatments very soon before any schedule outing she makes. She probably did a fresh batch of IVIg (Intravenous Immunoglobin) therapy in order to be able to visit the Grammys, and she is well enough for however many days after that she can go to events like the hockey game.

 

Thanks to Zofia for keeping an eye on what the SPS community are saying. I didn't read all the posts yet, but I will just say that progress in the medical community takes time. New drugs, new trials, their approval etc. can take years, even with increased resources. And people, including us dedicated fans, who have studied up on SPS knows that Celine is not "cured" and that she may very well still be having bad days.

 

And increased visibility is needed for increased research funding. Just how much research funding has increased is the qeustion.

 

There are two important days ahead: February 29 Rare Disease Day, and March 15 International Stiff Person Syndrome Awareness Day.

 

Probably on this occasion we will be able to find out how much research funding has increased. A year ago, Tara Zier wrote: „Looking back at last year, you pushed us past our annual fundraising goal by over 30 percent. A boost in fundraising followed singer Celine Dion’s courageous public sharing of her SPS diagnosis. Funds were directed to our mission: to raise awareness and support research for better treatments and a cure” (https://stiffperson.org/news/spsrf-blog.html/article/2023/02/26/remember-the-zebras-doggone-it-) (by the way, 30% doesn't seem like much, since media exposure of the disease has increased by 28,000%) - but in October “Jim Weiss [board member for SPSRF] noted that the Stiff Person Syndrome Research Foundation received a few more donations in the months after Dion’s diagnosis but nothing notable or sustained. The biggest positive, for him, was the awareness her announcement brought to the public” (https://www.nationalgeographic.com/science/article/stiff-person-syndrome-rare-disorder-causes-symptoms). Of course, there are two long roads from awareness to research funding and from research funding to implementation of new treatments... As one patient rightly pointed out in recent days: „The only good thing about Celine is she has brought SPS to the forefront which means research. Will we benefit….. unfortunately no but I pray the next generation will.”

 

It's a fact that after the enthusiasm of December 2022, Céline's case is stirring controversy in the patient community today. And it's hardly surprising: Céline is a public figure, she's been ill for a short time, and it's in her mental and business interests - absolutely understandable - to come out on stage again, say "I won't let this disease define me," and show herself to the world at her best. Only that the interest of the patient community is actually exactly the opposite: to show the world the terrible face of this disease, as well as to reveal effective treatments and call for fundraising. That's why some patients are writing - unfairly, of course, but let's understand their impatience: „Celine Dion doesn't seem to want to raise awareness of the disease at all. But I also agree that the very fact she has it and people are talking about it is good for folks with the condition” (comment from a group on FB).

 

I firmly believe that Irene's documentary will play an absolutely groundbreaking role and will end, or at least radically reduce, this controversy.

 

Finally, I will share the testimony of a patient from a FB group a few days ago, which moved me, because it shows that this is already happening, however, away from the cameras: „Believe me I’ve been in very dark places but you have no idea when people ask especially if I have to go to the ED and I’m twitching with severe spasms…. I just tell them I have what Celine has. Suddenly all the weird looks stop and the listen to me.”

[PuraVida]

The SPS community deserves total empathy. I do think that Celine is still in the beginning phase of her new life with this condition, so expecting her to be the standard-bearer seems a little premature. And perhaps it's unfair to place the burden on anyone regardless, even if they already have a platform.

 

Anyway, I hope that Celine finds the treatment that allows her to have as many good days as possible.

[Zofia]

I completely agree. Even people with a long history of illness cannot be required to make their condition public; health is one of the most private matters. That's why I'm talking about conflict of emotions, because subjectively these negative emotions of part of the patient community are understandable, although objectively unfair. If you have been fighting for years for a moment of pain relief, for understanding of your surroundings, for access and reimbursement of basic services, you may feel jealousy and anger towards a person suffering from the same condition, who dazzles everyone at the Grammy gala.

 

And on the other hand - the we wrote about this in a thread about the documentary - since Irene's camera accompanied her for a year, Céline must have agreed to be filmed actually right after the diagnosis. That's impressive courage.

[mirage]

 

 

 

There are two important days ahead: February 29 Rare Disease Day, and March 15 International Stiff Person Syndrome Awareness Day.

 

Maybe on 1 of those days we get something from the docu?

 

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[Zofia]

Maybe on 1 of those days we get something from the docu?

 

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

It could be. Although the premiere will probably be for a major festival. But if the premiere is scheduled for spring and not fall, a documentary announcement on March 15 (e.g., an interview with Irene?) would make sense.

[mirage]

 

It could be. Although the premiere will probably be for a major festival. But if the premiere is scheduled for spring and not fall, a documentary announcement on March 15 (e.g., an interview with Irene?) would make sense.

They would definitely hype it up.

I can see her doing a Met Gala surprise around anything docu related as well.

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[Nmj]

Here they interview a patient around Celine’s age, with SPS… it’s an interesting quick watch. She even alludes to the fact that (many here speculated) of why Celine wanted her Grammys appearance to be kept secret which is interesting coming from someone with SPS.

 

https://www.nbcchicago.com/news/local/elmhurst-woman-sheds-light-on-experience-with-stiff-person-syndrome-as-celine-dions-battle-raises-awareness/3364333/?amp=1

[scielle]

Here they interview a patient around Celine’s age, with SPS… it’s an interesting quick watch. She even alludes to the fact that (many here speculated) of why Celine wanted her Grammys appearance to be kept secret which is interesting coming from someone with SPS.

 

https://www.nbcchicago.com/news/local/elmhurst-woman-sheds-light-on-experience-with-stiff-person-syndrome-as-celine-dions-battle-raises-awareness/3364333/?amp=1

 

Interesting that this quotes Dr Amanda Piquet, the SPS specialist from the Anschutz is Colorado.

She’s on the medical advisory board of the SPS Foundation and is doing that seminar with Dr Nash in April -

 

Anyway, came here to say Dr Piquet and Dr Nash (both of Colorado, and both of whom specialize in autoimmune neurological diseases) are doing a seminar on "stem cells in neurology" (incl. SPS) in April, so there's clearly active research going on in CO on this type of treatment.

 

Goes to show, there really are so very few specialists in this condition. It’s the same 5 or so names mentioned in all research literature and press.

I feel like surely one of these people must have treated Céline (which of course they can’t disclose). But odds are high.

 

Edited February 24, 2024 at 07:40 PM by scielle

[Zofia]

Philip Anschutz's name links the medical campus where Dr. Piquet works with the AEG agency. Perhaps it's just a coincidence, or perhaps it was this coincidence that determined the choice of Colorado from the beginning.

[scielle]

Philip Anschutz's name links the medical campus where Dr. Piquet works with the AEG agency. Perhaps it's just a coincidence, or perhaps it was this coincidence that determined the choice of Colorado from the beginning.

 

Yeah I believe Céline may have in fact participated in a fundraiser for that medical campus, through the Anschutz connection, many years ago.

 

Anyway, also notable in that article is the mention of the discontent in the patient community that you have been writing about on here.

And does it sound like Dr Piquet knows more than we do about the doc?

 

“Papp said she was in awe of how Dion looked on stage, but she says some in the SPS community were also concerned Dion’s appearance did not convey the seriousness of the disease.

 

“Right now, look at me. I mean, I'm happy. I'm out and about. People probably say, ‘She looks fine.’ But the amount of effort it takes me to shower, it takes me to get to sleep at night,” Papp said.

 

Coinciding with the Grammys appearance came the news that an upcoming documentary capturing Celine Dion’s daily life with SPS will be released in the future.

 

“Having that documentary air, people are just going to know and learn this disease,” said Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado.

[…]

We need to, as a field, define the disease better, diagnose this disease better. And with the recognition now that this disease is getting, that will help and that will move the field forward with clinical trials,” Piquet said.“

[comingback]

Interesting that this quotes Dr Amanda Piquet, the SPS specialist from the Anschutz is Colorado.

She's on the medical advisory board of the SPS Foundation and is doing that seminar with Dr Nash in April -

 

 

Goes to show, there really are so very few specialists in this condition. It's the same 5 or so names mentioned in all research literature and press.

I feel like surely one of these people must have treated Céline (which of course they can't disclose). But odds are high.

Philip Anschutz's name links the medical campus where Dr. Piquet works with the AEG agency. Perhaps it's just a coincidence, or perhaps it was this coincidence that determined the choice of Colorado from the beginning.

Yeah I believe Céline may have in fact participated in a fundraiser for that medical campus, through the Anschutz connection, many years ago.

 

Anyway, also notable in that article is the mention of the discontent in the patient community that you have been writing about on here.

And does it sound like Dr Piquet knows more than we do about the doc?

 

"Papp said she was in awe of how Dion looked on stage, but she says some in the SPS community were also concerned Dion's appearance did not convey the seriousness of the disease.

 

"Right now, look at me. I mean, I'm happy. I'm out and about. People probably say, 'She looks fine.' But the amount of effort it takes me to shower, it takes me to get to sleep at night," Papp said.

 

Coinciding with the Grammys appearance came the news that an upcoming documentary capturing Celine Dion's daily life with SPS will be released in the future.

 

"Having that documentary air, people are just going to know and learn this disease," said Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado.

[…]

We need to, as a field, define the disease better, diagnose this disease better. And with the recognition now that this disease is getting, that will help and that will move the field forward with clinical trials," Piquet said."

 

 

UCHealth Neurosciences Center – Anschutz Medical Campus | Metro Denver

 

 

 

So I was right, she was there and is in therapy on this Medical Campus. I posted this link to the Anschutz Medical Campus in Denver in February 2023.

Edited February 24, 2024 at 09:42 PM by comingback

[Zofia]

And does it sound like Dr Piquet knows more than we do about the doc?

 

Yes, it sounds like more than speculation.

 

Coinciding with the Grammys appearance came the news that an upcoming documentary capturing Celine Dion's daily life with SPS will be released in the future.

 

Therefore, I think that regardless of the timing of the documentary's release, its announcement before the Grammys was a very good move. If, after months of silence and dramatic rumors in the media, Céline had appeared "in great shape" at the gala, it would have caused a lot of speculation: "Has she miraculously recovered? Or was she not sick at all?". People usually don't understand how non-linear a disease SPS is; we are too attached to the pattern that the patient's condition either steadily worsens, stays the same, or the patient recovers. It's hard to believe that someone can dance one day and not be able to get out of bed the next. The message, in which she declares that she had to learn to live with the disease, and that she told about her experience in the film, came at a well-chosen moment.

[PuraVida]

The fact that they're putting out a new vinyl in early April makes me think that her documentary might come out on her birthday, or around that time at any rate.

 

I love hearing the testimonies from other patients, although the fact that they're usually on local news channels in quick segments leaves me hungry for more information about their individual cases. By the way, was that brunette lady who was trailing Celine backstage at the Grammys one of her nurses perhaps?

[Zofia]

 

I love hearing the testimonies from other patients, although the fact that they're usually on local news channels in quick segments leaves me hungry for more information about their individual cases.

 

Here are some patient stories: https://stiffperson.org/what-is-stiff-person-syndrome/understanding-sps/patient-stories.html

It's also worth following the patients' social media: on the groups, people can speak anonymously and spontaneously, without censorship, and with the public accounts of several patients, you can accompany them in their struggle for a long time and better understand the disease:

https://www.instagram.com/bent_not_broken_autoimmune/

https://www.instagram.com/spswarriormom6/

https://www.instagram.com/_rea_68/

https://www.instagram.com/my.sps.journey/

https://www.instagram.com/spsunscriptedpodcast1/

https://www.instagram.com/one_in_a_mill_ian/

[scielle]

Also:

https://www.instagram.com/alexandrastamatopoulou?igsh=anhmeTgzYmdheWtq (Paralympic swimmer with SPS)

https://www.instagram.com/ehmichelle?igsh=MXhrOTNhd3BoMGdkMw==

https://www.instagram.com/powermadeperfect?igsh=MWZicHJscnJweG5yYg==

https://www.instagram.com/floofer_farm?igsh=MW04ZXRkMjUxMTl1dw==

https://www.instagram.com/lahomaismyfirstname?igsh=MTA2dW9ncWQwZnc3YQ==

https://www.instagram.com/chronicallyme.katie?igsh=OGpzNzR6cWZkbm5k

https://www.instagram.com/joey.sample?igsh=ZWZzZHZseTRsa20z

https://www.instagram.com/wenscripts?igsh=d3N5cWZhdmgxNm5l

 

Also, this blog: https://thestiffman.com/

He hasn’t posted for several months so hopefully that’s good news! He had HSCT about a year ago.

Edited February 26, 2024 at 12:34 PM by scielle

[PuraVida]

Do we think that scar on her chest was related to her condition? Maybe the result of a fall or a biopsy?

[jpatdeleon09]

Do we think that scar on her chest was related to her condition? Maybe the result of a fall or a biopsy?

 

Maybe because before she doesn’t have any scars.

[Zofia]

Do we think that scar on her chest was related to her condition? Maybe the result of a fall or a biopsy?

 

There seems to have been a lot of this subject has been speculated on. Well, this mark somewhat resembles a IV port / catheter site (inserted for plasmapheresis or for intravenous administration of more drugs), only that the location is not typical - the such IV ports are usually placed higher and not so centrally, not at the height of the heart. Location would rather indicate minimally invasive cardiac / valve surgery. But maybe it's just a dilated vein.

 

One recent photo from the Vegas locker room also shows a small bulge under her clothing below her left breast, shaped like a baclofen pump, which is not uncommon for SPS patients, but again - it is usually placed lower and more to the side. Mayby it is just a fold of clothing.

 

Maybe, maybe. We'll have to wait for the documentary to learn more about the treatment used. But the media hype surrounding the details of her appearance speaks volumes. Even without massive promotion, the documentary should find a much larger audience than just Céline's fandom; a wide audience likes stories about someone's struggle with an illness, especially a mysterious and frightening one.

[jpatdeleon09]

As long as the medicine is working. It’s ok you can just hide it with beautiful outfits

[Zofia]

As long as the medicine is working. It's ok you can just hide it with beautiful outfits

 

And by the way, if Céline really wanted to hide that mark of struggle, whatever it was caused by, IV port or surgery, Law would have easily found an outfit for her with a slightly smaller neckline. After all, she must have been aware that any such visible mark on her body would trigger a lot of commentary and speculation. I have the impression - perhaps mistakenly - that this is already a conscious creation of a new image: that of a warrior who doesn't pretend that "it is the same as before" and returns without hiding the scars of the battle she's been through.

[scielle]

Another patient story on the news (and referencing Céline, of course): https://regina.ctvnews.ca/regina-man-living-with-stiff-person-syndrome-hopes-celine-dion-s-diagnosis-shines-light-on-condition-1.6189060?fbclid=IwAR2lzP0gn-jPh1aTLbTvECo3vRHQzFPXzxe9ASANkf7SNdAV51T46HOGJP8_aem_AfmnzYhMsflSlXfaYAxThb5yFbYXwr8qvQbpXaWlWyCYznJFUNgV9UBLdNCrmKE2tM8

[Zofia]

Another patient story on the news (and referencing Céline, of course): https://regina.ctvne...9UBLdNCrmKE2tM8

 

This is one of the first reactions to Céline's announcement, back in December 2022, but only a few days ago discovered and shared by SPSRF

[scielle]

 

And by the way, if Céline really wanted to hide that mark of struggle, whatever it was caused by, IV port or surgery, Law would have easily found an outfit for her with a slightly smaller neckline. After all, she must have been aware that any such visible mark on her body would trigger a lot of commentary and speculation. I have the impression - perhaps mistakenly - that this is already a conscious creation of a new image: that of a warrior who doesn't pretend that "it is the same as before" and returns without hiding the scars of the battle she's been through.

 

I think, and hope, that you’re right. She seems like the kind who would bare her scars - literal and figurative - proudly.

That’s one of the things I admire about her. She’s so comfortable in her skin.

I never cared for Imperfections, the song, but loved the video and the intent behind it. I love that she seems to have embraced aging naturally. I love that she never pretended to be someone she’s not, or to be artificially “cool”. I love that she’s herself and owns it. That kind of confidence is so attractive, and so enviable. And it was really at the heart of her fashion Celinaissance - it wasn’t really about the clothes, it was about the confidence with which she wore them.

 

 

[Zofia]

I think, and hope, that you're right. She seems like the kind who would bare her scars - literal and figurative - proudly.

That's one of the things I admire about her. She's so comfortable in her skin.

I never cared for Imperfections, the song, but loved the video and the intent behind it. I love that she seems to have embraced aging naturally. I love that she never pretended to be someone she's not, or to be artificially "cool". I love that she's herself and owns it. That kind of confidence is so attractive, and so enviable. And it was really at the heart of her fashion Celinaissance - it wasn't really about the clothes, it was about the confidence with which she wore them.

 

Yeah, I was so enthralled by the video for "Imperfections" that I grew to like the song itself out of momentum Her look in the end of the clip grabs me every time. There's something going on there, without words, that you write about, which is hard to name, but which fascinates me about her too: a confidence that isn't egotistical or narcissistic, and an honesty or even truth, in the midst of fashion-theater poses and dress-ups. Some very much her "I play, but I don't lie." Goldman once said of her, "Cette fille ne triche pas." I like this sentence.

 

I wondered, by the way, how it happened that she gained this admirable confidence and harmony with her own body as she got older, despite the complexes of her youth that she talked about so many times. Usually at such times, I guess what pays off the most is what we got from our parents in childhood? I'm also impressed by the kind of simplicity and humility in the face of life with which she always referred to the most difficult experiences - illness, death, bereavement. It seems that this is not a common attitude in her social class... And I am very much looking forward to her reflection on what happened in the last years of her life. May she be able to both talk about it and sing about it.

Edited March 1, 2024 at 02:43 AM by Zofia