Céline has Stiff-Person Syndrome

[stone]

Thank you! I cannot remember the last time you agreed with something I said so this is nice to see!

 

🤣🤣🤣💀💀💀🩵

[mirage]

From the sps podcast instagram

 

https://www.instagram.com/stories/spsunscriptedpodcast1/3385749332173066576?igsh=MXhiMTd1cTZ4azdudw==

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[Nmj]

From the sps podcast instagram

 

https://www.instagram.com/stories/spsunscriptedpodcast1/3385749332173066576?igsh=MXhiMTd1cTZ4azdudw==

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

Almost feels as if the she’s hearing from the SPS community who are sharing her symptoms aren’t like theirs or aren’t “serious” enough.

[PuraVida]

From the Newsweek article someone posted earlier:

 

"Newly released studies found the prevalence of SPS to be closer to two to three per 100,000."

[kaye2023]

If Celine becomes an SPS spokesperson, she will draw from HER experience. And that of course involves the best care HER money can buy. The fact that she has already acknowledged her priviledge draws some very clear boundaries. Therefore, SPS patients should not complain about people assuming this is what they are going through. Celine has done her bit to differentiate her experience from the experiences of others.

 

The fact that people find SOMETHING to complain about is really showing their entitlement. Awareness is pre-requisite to their voices/experiences being heard, research to be funded/conducted, the issue in its own right to be put on the map and taken seriously. Like it or not, this was achieved because Celine came out. She has already done enough, but here we are consuming complaints from people who have already benefited from the fact that Celine publicly spoke about SPS.

 

If THEY were in her place what would THEY do? I would really like to ask that question. Stop public appearances in good days so that a wrong impression is not given? Stop people from giving standing ovations over trivial matters like showing up at the Grammy Awards or a Hockey game? Not release a documentary because this might not account for the experience of all SPS patients? Would they not get the best medical care for themselves?

 

I really do not understand what these people want. I have experienced lack of priviledge in several aspects of my life, but have never complained about those who are more priviledged than I am because I have the maturity to understand this is not their fault - it is the system's/society's fault. Of course, I have caught myself feeling jealous and wishing things would be different, but have never complained publicly or tried to put the blame on those who enjoy some sort of priviledge. Excuse me, but reading those comments made me feel disgusted. This sense of entitltement and the need to control Celine's narrative of HER experience is appalling.

 

Thoroughly in agreement with this.

 

I feel that Céline's image in the patient community has been harmed by two things: the media-publicized, unfortunate statements (true on Claudette's part and alleged from anonymous insiders) that she “has the best care money can buy” and “deserves to recover,” combined with the uproar over the Grammy ceremony. It seems to me that Céline herself has a great sense of reality, rare in people with her wealth status. In Vogue, she said honestly, “I have resources that other people don't have.” - but at the same time she wants to be a “spokesperson for SPS.” It's a difficult combination, however. How will she handle it?

 

I think the fact she has self-awareness of the medical support her wealth gives her access to and is very vocal about it, already balances out a lot of the fear of misrepresenting or harming the SPS patient community. I'd would rather frame the economic disparity as the disease affecting indiscriminately, plebs and 1%ers alike so the medical community can both offer more options on (affordable) disease management and get more $$ for research (ala MJFox and his foundation being the face soliciting $$ for Parkinson's research), and ease any social stigma since this is not a "disease of the poors." To me, there are no negatives, just positives.

[Zofia]

 

I think the fact she has self-awareness of the medical support her wealth gives her access to and is very vocal about it, already balances out a lot of the fear of misrepresenting or harming the SPS patient community. I'd would rather frame the economic disparity as the disease affecting indiscriminately, plebs and 1%ers alike so the medical community can both offer more options on (affordable) disease management and get more $$ for research (ala MJFox and his foundation being the face soliciting $$ for Parkinson's research), and ease any social stigma since this is not a "disease of the poors." To me, there are no negatives, just positives.

 

However, this is probably not the most important thing that seems right to us, as long as we are not sick ourselves. SPS is not a disease of the poor - but SPS treatment is for the rich (do we know how much IVIG costs? Rituximab? How often do patients not get reimbursed? Not to mention the cost of physiotherapy, psychotherapy, etc.).

 

I had deluded myself into thinking that Céline fans would be curious to see how the small online community of sufferers commented on the situation, i.e. what their spontaneous, uncensored statements were. I now feel guilty towards these quoted (albeit anonymously) people, because they spoke in the safe space of private groups and the last thing they need is for their emotions to be judged by people who only know SPS from the media. I won't make that mistake again.

 

And as for the “just positives” - after Dec. 8,2022, the disease is incomparably better known and probably more frequently diagnosed. But the lives of people with the disease over the years haven't changed for the better one bit, their access to treatment hasn't improved one bit, research funding in the long term hasn't improved one bit (just read the SPS Research Found reports. I don't know how many of Céline's fans have contributed even a dollar there; I think not very many: fans know that she herself doesn't need the money, they often know little about the disease and are more concerned with her appearance, her comeback and the release of PMALS. And it is understandable, no one appealed to them: Contribute. Perhaps the Hoda interview and documentary will change that). It would be absurd to accuse Céline, who has her burden to carry, of this, but these are the facts and denying them is equally absurd. I hope the documentary will really open many people's eyes.

 

As long as we ourselves do not suffer from a chronic disease that can turn people's lives into a nightmare, we can feel smarter and fairer. However, I would suggest caution in judging whether what patients feel is “right” or not.

[scielle]

I had deluded myself into thinking that Céline fans would be curious to see how the small online community of sufferers commented on the situation, i.e. what their spontaneous, uncensored statements were. I now feel guilty towards these quoted (albeit anonymously) people, because they spoke in the safe space of private groups and the last thing they need is for their emotions to be judged by people who only know SPS from the media. I won't make that mistake again.

That’s unfortunate because I’m curious about the SPS community’s reaction and really appreciated you posting it here, as I myself have been unable to find much lately. But, after what was written here last time, I can understand why you wouldn’t.

[Davey84]

 

I had deluded myself into thinking that Céline fans would be curious to see how the small online community of sufferers commented on the situation, i.e. what their spontaneous, uncensored statements were. I now feel guilty towards these quoted (albeit anonymously) people, because they spoke in the safe space of private groups and the last thing they need is for their emotions to be judged by people who only know SPS from the media. I won't make that mistake again.

 

 

I am sorry to hear you feel this way, because I am curious about what the SPS has to say about this. It gives us a better insight on how they deal with this chronic decease. And what goes on in their lives. However, as this is a Céline Dion forum, fans here will 'defend' Céline, whether they need to or not. Every story has to sides. Yes, Céline is wealthy so she can undergo other treatments most people can't, but if Céline's story and journey can result into larger public knowledge of the decease, quicker and better diagnoses, more funds for treatments and possibly a cure, then it's still a win for all SPS patients.

 

That's unfortunate because I'm curious about the SPS community's reaction and really appreciated you posting it here, as I myself have been unable to find much lately. But, after what was written here last time, I can understand why you wouldn't.

 

Totally agree!

[kaye2023]

However, this is probably not the most important thing that seems right to us, as long as we are not sick ourselves. SPS is not a disease of the poor - but SPS treatment is for the rich (do we know how much IVIG costs? Rituximab? How often do patients not get reimbursed? Not to mention the cost of physiotherapy, psychotherapy, etc.).

 

I had deluded myself into thinking that Céline fans would be curious to see how the small online community of sufferers commented on the situation, i.e. what their spontaneous, uncensored statements were. I now feel guilty towards these quoted (albeit anonymously) people, because they spoke in the safe space of private groups and the last thing they need is for their emotions to be judged by people who only know SPS from the media. I won't make that mistake again.

 

(snip)

 

As long as we ourselves do not suffer from a chronic disease that can turn people's lives into a nightmare, we can feel smarter and fairer. However, I would suggest caution in judging whether what patients feel is “right” or not.

 

I am quite new to the forum but I have consistently enjoyed reading your informative posts, so don't take my comment as an "attack" on you. I think your view is too combative and rigid. Just because I/some don't fully agree with a certain perspective, you quickly dismiss and think the worst of our character.

 

The quotes and feelings of the SPS patients you shared are all valid, important to be heard, and a very important part of the dialogue discussing this disease. No one is even disputing that, you're imagining us with the arrogant "feeling of being smarter and judging they're right/wrong." It's good you're sharing that aspect of the patient community, just as it's good Celine is sharing another aspect that she's more familiar with. They can all be right, it's not a contest where one is declared the ultimate rep. They should all be heard, from those having difficulties getting medical access, to those as fortunate as Celine; from those whose medical journey has only started, to those who've endured the worst progression. Damned if you do, damned if you don't. If she doesn't talk about it, she'll be berated for wasting her platform. Talk about it, she's overstepping her repping. Womp womp.

 

When I said "I see no negatives only positives" I don't mean "I see no negatives only positives, and those quoted patients are idiots and wrong." I mean "I see no negatives only positives, hopefully the patient community can eventually see the benefits of someone like Celine advocating for the disease and patient welfare."

 

My point exactly about the world seeing it's not a disease of the poors and plebs, the more it's talked about esp in the the medical community, the more info and possibly affordable options are made known. I have seen a few random entertainment fora talking about Celine's SPS and some bringing up their own cases and what helped, only for others to chime in that that's new info and might actually help them/someone in their family, etc. Experimental, off-label or trial management etc. Easing of social stigma alone garners the celeb association some points.

 

after Dec. 8,2022, the disease is incomparably better known and probably more frequently diagnosed. But the lives of people with the disease over the years haven't changed for the better one bit, their access to treatment hasn't improved one bit, research funding in the long term hasn't improved one bit (just read the SPS Research Found reports. I don't know how many of Céline's fans have contributed even a dollar there;

this is just too bizarre and strange a demand and expectation from a fans community and from an announcement made 1.5 yrs ago. A fan forum that repeatedly asks for donations to maintain operations. If I had spare 100ks lying around I'd love to donate to the SPS community (AND this website butofcoursecheerstoKoolan lol). Personally, and unfortunately, my cards are in dire conditions right now off the recent cancer diagnosis, hospitalization and eventual death of my brother. That is my story. Others here would have their own.

 

No one is thumbing their nose down on anyone. We are all just trying to stay afloat, support and making sense of things where we can and how we can. we're just talking in this forum. There is no competition to be who's right or wrong.

[LukeD]

Yes, the CelineDionForum is not much of a "safe" space to be reinforcing accusations of her priviledge, especially at a time when Celine is pretty much disabled in the sense that she cannot sing/tour because of her chronic, progressive, painful disorder.

 

Nobody should have to apologise for that. Epsecially when fans defending Celine are dismissed as insensitive, unfair, and ignorant in quite a passive-aggressive manner.

Edited June 10, 2024 at 12:28 PM by LukeD

[Állex Sodi]

This debate made me think about a experience I had that may give some perspective:

 

A few years ago an aunt of mine, whom I was very close, was diagnosed with breast cancer and died after one year. At the same time she was struggling, a very know television host also was in treatment for breast cancer. She later told her story about overcoming the disease and it was everywhere.

 

I was so mad about the whole press. I got increasingly angrier towards her every time I saw her in television taking about it. She got treated with the best doctors and possibilities cause she got money and my aunt died waiting for public health care. It wasn’t a rational thing, was just the emotions that built up during that time.

 

Today I think about it and it feels so silly. I actually really like the tv host and I’m glad she is fine and healthy. I understand now that what I was actually angry about was the system, a social structure that decides that if you have money you live and if you don’t you deserve to die. But that system doesn’t have a face, it’s not attainable. When you feel with pain, suffering and powerless with everything, you just aim to whatever is closer.

 

Just be kind with SPS patients. Things they might said it’s not about Celine, even if it is. It’s just that she is the face of the privilege in this matter. And with all the suffering, it’s really hard to look past that.

 

 

[Zofia]

That's unfortunate because I'm curious about the SPS community's reaction and really appreciated you posting it here, as I myself have been unable to find much lately. But, after what was written here last time, I can understand why you wouldn't.

 

Heartfelt thanks.

I think I can send their comments after the interview and the documentary to those of you who are curious about them, but I would prefer to do it in private correspondence, no longer in public.

 

we're just talking in this forum. There is no competition to be who's right or wrong.

 

The topic is certainly complicated. It's true that I don't have a cool perspective on the matter - I've been in contact with the community of seriously ill people for many years, and in the last year I've met two people with SPS by correspondence (thanks to Céline), and I know various aspects of their anguish. Material ones, too. Maybe that's why I realize that “being unfair” is simply part of the experience of a serious illness. It's very possible that someone's fans don't necessarily know or respect that. And it's possible that I understand more the life problems of people in a really nightmarishly difficult situation than the emotions of people fascinated by a public figure they don't even know personally, and offended because someone said something unkind about her. I myself sincerely admire and appreciate Céline, but at the same time I understand the frustration of part of the patient community. Perhaps I can't convincingly present their point of view? Too bad.

 

As for finances - everyone carries something, and no one is obliged to financially support nothing. I raised this topic for one reason: people connected with SPSRF themselves said that Céline's diagnosis radically changed the awarness of the disease in the media, but did not change the very poor funding for research. I didn't mean any of the forum members; it would have been enough if those among her thousands of followers who could afford it had felt that supporting SPS patients was now an important issue for them - and there would have been hundreds, not dozens, of contributions (however small). But apparently they didn't feel it. I tried to answer why.

 

Yes, the CelineDionForum is not much of a "safe" space to be reinforcing accusations of her priviledge, especially at a time when Celine is pretty much disabled in the sense that she cannot sing/tour because of her chronic, progressive, painful disorder.

 

Nobody should have to apologise for that. Epsecially when fans defending Celine are dismissed as insensitive, unfair, and ignorant in quite a passive-aggressive manner.

 

I think everything has already been said. If you actually think it's necessary to “defend Céline” from a few patients in poor health and financial situations, it reinforces my point. Being uncritical is never safe space, but it's possible that you're right, because that's the nature of any community of someone's fans?

Edited June 10, 2024 at 04:22 PM by Zofia

[Ukrfan]

I never understood this “best doctors” argument from the SPS community. Celine lost her husband (and brother) to cancer and her millions couldn’t save him. SPS is even a more rare disease. There are like what - 10 doctors in the US that actually specialize in it?

 

And even then, it took her years and multiple doctors to get diagnosed, just like regular patients. Money isn’t everything.

[Zofia]

I never understood this "best doctors" argument from the SPS community. Celine lost her husband (and brother) to cancer and her millions couldn't save him. SPS is even a more rare disease. There are like what - 10 doctors in the US that actually specialize in it?

 

And even then, it took her years and multiple doctors to get diagnosed, just like regular patients. Money isn't everything.

 

Surely money isn't everything. But it was Claudette who talked about "the best doctors" in every interview, and Celine herself said for French Vogue: « Les gens qui souffrent du SPR n’ont peut-être pas la chance ni les moyens d’avoir de bons médecins, de bons traitements. J’ai ces moyens-là » (“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means”). Beyond that, we only know how long she had symptoms - but we don't know how long she was diagnosed.

[Ukrfan]

 

 

Surely money isn't everything. But it was Claudette who talked about "the best doctors" in every interview, and Celine herself said for French Vogue: « Les gens qui souffrent du SPR n’ont peut-être pas la chance ni les moyens d’avoir de bons médecins, de bons traitements. J’ai ces moyens-là » (“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means”). Beyond that, we only know how long she had symptoms - but we don't know how long she was diagnosed.

 

Well Noda said that Celine had visited many doctors and started to think she was crazy because they couldn’t find anything, so I guess she was being diagnosed for a looong time

[PuraVida]

I'm the type to be very critical of someone who can't (or refuses to) acknowledge their privelege, including but not limited to their economic privelege. That goes for Celine too.

 

At the same time, while I'm indeed interested in the responses of the SPS community, I guess one question would be what do they expect from her? And are those (or any?) expectations fair?

[GoldenLeaf]

I'm the type to be very critical of someone who can't (or refuses to) acknowledge their privelege, including but not limited to their economic privelege. That goes for Celine too.

 

At the same time, while I'm indeed interested in the responses of the SPS community, I guess one question would be what do they expect from her? And are those (or any?) expectations fair?

Not sure what they actually expect from her... from what I have seen/read: a lot of bitterness and jealousy coming from them due to the fact she's a wealthy celebrity... So what? Are they expecting her to pay for their medical bills?

Edited June 10, 2024 at 10:14 PM by GoldenLeaf

[CelinesDIVO5]

I'm the type to be very critical of someone who can't (or refuses to) acknowledge their privelege, including but not limited to their economic privelege. That goes for Celine too.

 

At the same time, while I'm indeed interested in the responses of the SPS community, I guess one question would be what do they expect from her? And are those (or any?) expectations fair?

 

Celine has been very clear of her privilege throughout her entire career.

[Zofia]

 

At the same time, while I'm indeed interested in the responses of the SPS community, I guess one question would be what do they expect from her? And are those (or any?) expectations fair?

 

Not sure what they actually expect from her... from what I have seen/read: a lot of bitterness and jealousy coming from them due to the fact she's a wealthy celebrity... So what? Are they expecting her to pay for their medical bills?

 

These were just their comments and reactions to what they found in the media. Different emotions. Some express gratitude, others hope, others frustration. Why should this mean that they have any "expectations" of her? The topic concerns them because they share the same - hugely rare - diagnosis with a very famous person, but their world does not revolve around Céline. They don't spend hours following her every word, as most of us do.

 

Is it really something more understandable to have fans' frustrations dragging on for pages in multiple threads over a bad haircut, bad makeup, a poor setlist, disappointing album content and insufficient promotion of their favorite star - and something more outrageous to have patients frustrated that they don't have access to the life-changing therapy this star benefits from? Sorry, I don't buy it.

 

To be clear again: this is not an accusation against Céline. Neither on their part, let alone on mine. Her privileges are neither her fault, nor do they alleviate her suffering (for it is a purely subjective phenomenon, not measurable on any objective scale, experienced by everyone at their own center of the world). But what is so strange about the fact that - especially in the face of a cruel disease - someone's privileges arouse the frustration of the unprivileged?

 

I believe that Céline will play a great role in the story of the treatment of this disease. I admire that she was willing to talk about her struggle so quickly. And at the same time, I think she would understand the frustrations of other patients better than many of us.

[PuraVida]

Celine has been very clear of her privilege throughout her entire career.

 

Yes, I agree.

[scielle]

The SPS Reserch Foundarion posted about the interview -

 

“Céline Dion's willingness to share her struggles with SPS has been instrumental in raising awareness of this terrible disease. As the premier event of 'I Am Celine Dion' approaches, we anticipate even more people will soon become aware of the struggles the SPS community faces.

We all have a role to play in finding better treatments and, ultimately, a cure for SPS, and we're thankful for the voice Celine Dion has provided to this cause.”

 

- and about the doc preview screenings -

 

“We're excited about the premier event of "I Am Celine Dion" on Monday, June 17th, and its opportunity to raise awareness of SPS and the daily struggles the SPS community faces.

If you're interested in attending the premiere, showings are planned in 11 cities across the US. Check the link below for information on the hosting venues and tickets.

www.amazonscreenings.com/iamcelinedion

Please note that this is NOT an SPSRF event. Questions should be addressed through the contact information provided in the links.“

 

https://www.facebook.com/share/GTtHkDtnnhHiyrAH/?mibextid=LQQJ4d

 

 

 

[kaye2023]

You can be an advocate for them without being patronizing or belittling others who differ slightly/fully in opinion. I am trying to say this as kindly as I can since your admitted bias seems to come from your deeper emotional investment in the communities your frequent.

 

Do you really think people in this forum are millionaires? 99% chance almost everyone here has money issues and serious health issues (our own or someone in the family) and are very aware of the "unfair" astronomic costs of medical care, especially if you're in the US or anywhere without safety nets. It is not exclusive to SPS patients. You don't need to equate any differing opinion to lack of respect (??), naivete/ignorance, or apathy towards SPS patients. You already understand the core of our opinion, you've said it yourself: "I myself sincerely admire and appreciate Céline, but at the same time I understand the frustration of part of the patient community." It is not complicated, you are the only one complicating it by equating any differing opinion/wording as spitting on the patients' faces. It is unnecessary hostility and ridiculous.

 

Significant research funding almost always comes from private sector/solicitation, not gofundme pass the hat style. Bigger orgs/foundations whose sole purpose is to network and fundraise are the ones who will have the clout to solicit from wealthy individuals/charities. If Celine starts one (like her CF one), great. You can start one yourself, if you are as invested as you come across. I'm not being sarcastic, go for it. I do not have high demands or expectations Celine will start one so near her diagnosis and is still adjusting to her condition and new reality. Your demands for patients to be immediately financially assisted, and hundreds of millions for research to suddenly pour in after 1.5 yrs are unrealistic.

 

If Celine/any celebrity were the type to minimize the disease because she gets better care thus doesn't feel the symptoms as much, then she's an #ss and should shut up. But she's not. she has been very vocal that it's a debilitating and nightmarish disease and that she's so fortunate to have the money to access better healthcare. I'm not even speaking as a "defending fan"--objectively, you cannot get a more humble and self-aware celebrity to be the face of a disease. If she didn't have the celebrity money she seems to be resented for, she would receive as much exposure as any average SPS patient, yeah, close to none.

 

The topic is certainly complicated. It's true that I don't have a cool perspective on the matter - I've been in contact with the community of seriously ill people for many years, and in the last year I've met two people with SPS by correspondence (thanks to Céline), and I know various aspects of their anguish. Material ones, too. Maybe that's why I realize that “being unfair” is simply part of the experience of a serious illness. It's very possible that someone's fans don't necessarily know or respect that. And it's possible that I understand more the life problems of people in a really nightmarishly difficult situation than the emotions of people fascinated by a public figure they don't even know personally, and offended because someone said something unkind about her. I myself sincerely admire and appreciate Céline, but at the same time I understand the frustration of part of the patient community. Perhaps I can't convincingly present their point of view? Too bad.

 

As for finances - everyone carries something, and no one is obliged to financially support nothing. I raised this topic for one reason: people connected with SPSRF themselves said that Céline's diagnosis radically changed the awarness of the disease in the media, but did not change the very poor funding for research. I didn't mean any of the forum members; it would have been enough if those among her thousands of followers who could afford it had felt that supporting SPS patients was now an important issue for them - and there would have been hundreds, not dozens, of contributions (however small). But apparently they didn't feel it. I tried to answer why.

 

 

 

[scielle]

Your demands for patients to be immediately financially assisted, and hundreds of millions for research to suddenly pour in after 1.5 yrs are unrealistic.

But she’s never made any such demands or anything remotely like it? Quite the opposite, I’d say.

[kaye2023]

But she's never made any such demands or anything remotely like it? Quite the opposite, I'd say.

 

Zofia keeps mentioning costs/financial concerns (def a valid concern for patients, not so much a valid concern in the discussion of Celine's role as advocate), unfair medical access due to money, and money wrt lackluster fan donations all to improve the lives of patients. On the research side, it would be ridiculous to expect developments to suddenly pop up in such a short amount of time, even if they're experimental. Even if you manage to raise one zillion in a span of 1.5 years, R&D would follow the same realistic timeline as previously. It will not be delivered as soon as the one zillion cheque is signed. It will take time, 5 years, a decade... In the meantime, how else should the hypothetical brimming funds be used to improve patients' lives but patient assistance. The implication leans that way enough for even someone to confusedly ask "do they expect her to pay their medical bills?" That this (fan donations) and "disrespect" are even brought up in this discussion is strange to me.

 

It just as strange that she seems to understand "The topic concerns them because they share the same - hugely rare - diagnosis with a very famous person, but their world does not revolve around Céline" but refuses to understand that we/some/most may care and are concerned about Celine, SPS and SPS patients, but our world does not revolve around Celine/SPS and we also have our own realities to deal with, and that does not mean "disrespect" or ignorance. A lot of people on here whom she mocks for being concerned about setlists and makeup are here for a few moments of distraction or pick me ups from life. It doesn't mean they're cruel, it just means they have other s*** they need to deal with.

[Zofia]

Now I will try to say it as kindly as I can: in the field of “being patronizing” we have a tie, let's check how it is with reading comprehension.

 

I wrote: “I didn't mean any of the forum members; it would have been enough if those among her thousands of followers who could afford it had felt that supporting SPS patients was now an important issue for them - and there would have been hundreds, not dozens, of contributions (however small).”

 

 

Do you really think people in this forum are millionaires?

Your demands for patients to be immediately financially assisted, and hundreds of millions for research to suddenly pour in after 1.5 yrs are unrealistic.

 

 

I'm afraid the source of the misunderstanding, however, is much deeper than my ignorance of English, so from my side EOT.

 

 

But she's never made any such demands or anything remotely like it? Quite the opposite, I'd say.

 

Thank you, I thought so too

[kaye2023]

"“I didn't mean any of the forum members; it would have been enough if those among her thousands of followers who could afford it had felt that supporting SPS patients was now an important issue for them - and there would have been hundreds, not dozens, of contributions (however small).”

 

"I don't really care about how many fans donate or however small, but I will berate the number of fans who did not donate and resulted in a small amount. Shows how much they care! Not as much as I do."lol (see below)

 

YOUR COMPLAINTS:

after Dec. 8,2022, the disease is incomparably better known and probably more frequently diagnosed. But the lives of people with the disease over the years haven't changed for the better one bit, their access to treatment hasn't improved one bit, research funding in the long term hasn't improved one bit (just read the SPS Research Found reports. I don't know how many of Céline's fans have contributed even a dollar there;

 

"it would have been enough if those among her thousands of followers who could afford it had felt that supporting SPS patients was now an important issue for them - and there would have been hundreds, not dozens, of contributions (however small). But apparently they didn't feel it. "

 

Sigh. In your eagerness to point out how awful and lacking in "respect" we are for not being totally agreeable to some patient quotes you shared, YOU brought up disappointing fan donations as a measuring stick, be it donation from anyone or everyone, fans forum-based or not.

 

1. It is bizarre you even use this irrelevant detail as arsenal in a discussion of whether Celine is a fit repping advocate for SPS or not

 

2. Your two concerns regarding money: for research and to address unfair affordability of treatments. Obviously fans and their meager donations cannot make the R&D wheel spin any faster, so the former is out of our hands. As for the latter, how else did YOU mean for any funds raised to help improve patient lives if not as some sort of financial assistance? I'm genuinely interested to know.

 

3. Not agreeing in part/full with the patients quoted does not mean we think they're garbage or beneath us. Goodness that even has to be said.

 

There is no misunderstanding. You tend to speak both sides of your mouth, needless berating (whether intentional or not) and then you try to smooth it over with "but that's not what I mean" or "but no expectations", complete with huffing away with "i won't share quotes anymore." but I do understand that you're heavily invested in that community, more than most, so ok. I'm honestly not upset or bothered. I find this convo with you strange and bewildering, and only joined in when your contentious post 1797 made me go "ok what an odd take..."

 

[kaye2023]

Yes, Céline is wealthy so she can undergo other treatments most people can't,

 

Wouldn't it be something if they end up finding the definitive treatment that docs would have otherwise never attempted due to cost and a guinea pig who can afford that cost. The tone would switch to from begrudging her for being rich, to "thank goodness she's rich" so fast.

[incognito]

 

 

Wouldn't it be something if they end up finding the definitive treatment that docs would have otherwise never attempted due to cost and a guinea pig who can afford that cost. The tone would switch to from begrudging her for being rich, to "thank goodness she's rich" so fast.

 

There’s a very good chance that’s what will transpire.

[scielle]

The SPS Research Foundation posted about the interview and about the doc preview screenings -

 

"We're excited about the premier event of "I Am Celine Dion" on Monday, June 17th, and its opportunity to raise awareness of SPS and the daily struggles the SPS community faces.

If you're interested in attending the premiere, showings are planned in 11 cities across the US. Check the link below for information on the hosting venues and tickets.

www.amazonscreenings.com/iamcelinedion

Please note that this is NOT an SPSRF event. Questions should be addressed through the contact information provided in the links."

 

https://www.facebook...mibextid=LQQJ4d

 

Someone in the comments asked if SPSRF was involved in the making of the doc. The answer was "No, unfortunately we weren't involved in anything related to making the documentary."

 

... which I think is a bit of a bummer. Feels like that's at least a convo Irene's team should have had.

[mirage]

Unfortunately I think that Céline will never do good in the eyes of some people.

Whether she talks about it, or shows up at the Grammys in full fashion.

 

She is indeed very lucky to have access to doctors and health care.

And unfortunately the healthcare system in many countries just socks. So if there is someone to blame its definitely not Celine.

 

But I get the bitterness and jealous comments. My guess is that Céline hasn't figured out yet what she as a celebrity with a rare disease can mean for the community.

 

Like she said in the Vogue interview, is her mission to be a mother, a singer, a spokesperson for SPS, or all the above.

 

She got diagnosed, that takes time mentally, she needs to be onstage.

I would say that's the main focus now, and after that she will do what's right for this community.

 

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