Will Venus Williams’ Sjögren’s Syndrome Help RA?
We had an interesting conversation on Facebook yesterday about the Venus Williams’ Sjögren’s syndrome diagnosis (actually 5 of them by day’s end). Some were wondering whether the diagnosis of another famous person with an autoimmune (AI) disease will help bring awareness for RA. Probably not. Why not?
- Celebrities have been diagnosed with RA (and PsA) and that didn’t help.
- “Sjögren’s syndrome” sounds like a disease; there’s no “arthritis” in the name even though joint symptoms occur.
- The news stories over the last 24 hours prove me out.
Guess what happens if you Google “sjogrens” now? Just like that. The top result is a photo of Venus with a Time article about Venus’ diagnosis. I find it fascinating that they say Sjögren’s is so rare and then explain it by comparing it to lupus (SLE), a disease just as rare. By the way, Elizabeth Cohen on CNN does the same. (Don’t miss this chart from Mayo Clinic showing how common or rare Sjögren’s and other AI diseases are in men and women.)
Why isn’t RA mentioned, when not only is RA similar to Sjögren’s, but also a large percentage of RA patients actually have Sjogren’s syndrome as well? As a matter of fact, half of the time, Sjogren’s occurs with another autoimmune disease, usually RA. Why not explain the rare disease in terms of its common cousin RA, over four times as common as lupus or Sjögren’s?
Because it wouldn’t do any good. No one knows what Rheumatoid Arthritis is. Isn’t it that thing that everyone has a touch of?
Do we really need our own Venus Williams for RA?
There is a lot of concern and awareness for Sjögren’s, lupus, spondylitis and other AI arthritis conditions with organizations with budgets in the millions (or hundreds of millions) of dollars spent on public awareness campaigns, research, and patient outreach. RA has some catching up to do. But we won’t do it by taking some of the sympathy that Venus generously deserves.
Sometimes I hear, “We need a famous person to have RA.” My response is this: we have RA already. Let’s put it on the healthcare map ourselves. Instead of a famous person getting RA, we’ll just make RA famous. We’ll be our own celebrities.
A new normal
I didn’t want to blog about the Venus-Sjögren’s news. And then I watched this interview: “Venus Williams Opens Up on Illness: Tennis star explains Sjogren’s syndrome that made her drop out of U.S. Open” on the ABC News website. I got a bit choked up like I was reading a testimony from someone with RA. Venus said:
- “No matter how hard I trained, I never had stamina…I had fatigue which was really debilitating. It’s not that you have no energy – you just feel beat up.”
- And then she mentioned joint pain and noticing the “changes in shape” of her joints.
- She resolves: “My normal might not be everyone else’s normal, but I feel like now I can get better.”
I remember saying the same thing. I really hope so still. For Venus and for me.
Postblog: After the Venus video, the ABC website auto-plays a video of Dr. Richard Besser explaining more about Sjögren’s syndrome. He says patients can have “a normal lifespan” or “symptoms can be quite debilitating.” This whole thing is curious. She’s such a beautiful woman. Why didn’t anyone say, “But Venus, you don’t look sick”? Maybe because we already know Venus; so we know she’s not a pansy. See what the interviewer says: “You have been an athlete who has never once complained of injury or illness. You let your playing do your talking.”
So Venus is believed – the way my friend Leslie believes me. She believes me more than anyone who doesn’t know me can believe me – because Leslie really knows me. She knew what I was like before RA changed my normal.
Recommended reading
- What is Sjogren’s Syndrome?
- 20 Facts About Rheumatoid Heart Disease
- Phil Mickelson’s Psoriatic Arthritis
I have been watching the buzz of this with sadness. First, another human has one of the AI that can’t be cured and second, ra is still left on the sidelines as usual while another AI is featured due to a celebrity. Sometimes it is disheartening to realize just how much work needs to be done both in the medical community and at large with ra. And since I want to look on the bright side of things, maybe if another AI gets a true breakthrough with a cure, we in the ra world will also reap the benefits.
That’s likely true – what they learn with the huge amount of money alloted to the other diseases can help RA – any clue about genetics or about the immune process can help with the whole picture.
I hear ya Kelly..My cousins husband is a pro golfer and i told him to tell Phil that his commercials make it seem like the medicine cured him and it doesnt! I hope he will carry the message to Phil! I get so worn out see his commercial. Sometimes i want to scream at the tv! That wouldnt do any good or i would..lol I just wish we could get we could get the truth out! Your getting us there with your good work Kelly. Someday! Keep up the good fight. Thanks for all you do..
“Instead of a famous person getting RA, we’ll just make RA famous.”
This is the right answer.
I sometimes despair, though. After five and half years with a diagnosis and several years before without I can’t even get some of my close friends to understand. I even have one who says she doesn’t worry about it because she’s sure they’ll cure it within a few years. :/
And she has Graves Disease. So double :/
I think if I had gotten only SS instead of what I have (7 diagnoses, I think) – most significantly: RA, then I might have gotten understanding… who knows becuase I had the thyroid dx since age 15 and no one understands that either. I wonder if close friends/family who don’t try to understand realize that this hurts us – I doubt it.
Will it help RA? I doubt it very much. My bet is that she’ll become another media whore for what ever drug(s) she takes. And that will drive our health care costs up even more — to pay for the advertising.
Yes, I am very sorry for Phil Michelson and for Venus Williams. Neither deserved the illnesses, but they would do far more good promoting RA and associated illnesses than pimping for a drug company.
Nope, I don’t think having an RA Venus would help – you hit the nail on the head. It needs to be Rheum Autoimmune.
Rheumatoid is an adjective; applied to “arthritis” people hear it as “arthritis, a particular kind of arthritis.”
In the hours since I read your post about this I’ve become increasingly certain. Change that and you’ll change the world. I mean it.
I could not have said that better (though I’ve been saying something very similar). People ONLY hear “arthritis”… “change the name and you’ll change the world”
beautiful!
Sad for Venus Williams to see she has joined the ranks – gosh by her discription of her symptoms – I think thats what I have instead of RA. anyway – discusted with ABC Richard Bessler – who made the comment his friend the surgeon has had it all his life and at 80 is still in the operating room – blowing it off as if what we all have is ” not so bad” to deal with. He’s a fraud. Kelly you are correct we need to be our own celeberties – keep up the great work
I feel awful that Venus Williams has an autoimmune disease. No one should get these diseases. Not me, not you, not any of us. I will say that since I have Sjogren’s along with my RA, if Venus having the disease makes the public more educated and aware because she is a celebrity that helps me in some way. Will it get more funding for Sjogren’s? No probably not. Will it make people more educated about RA? As you have testified, no most likely not. But can keeping autoimmune diseases in the public eye be such a bad thing? Can educating the public (and my mother) be such a bad thing? A more educated public is a more compassionate and caring public. I know I could use some compassion sometimes!
PS My partner HATES those Phil Mickelson commercials too! She asks why doesn’t Enbrel make you magically better?
There is a guest post by David B recently where he says his daughters ask him too: Daddy why doesn’t that help you? Sad. But yes any awareness that contributes to compassion will be good. I hope she is not just another Phil. But if she works w/their SS foundations the they may get more funding – but that won’t help RA funding. We still have dismal funding because of the confusion about “arthritis.”
here is the link. 🙂 https://www.rawarrior.com/excellent-rheumatology-care-with-a-horrible-rheumatoid-disease/
Ironically, I am watching TV and the Phil Mickelson Enbrel commercial just played. Too bad many of us will never experience the miracle cure he seems to have had.
and even Phil’s miracle will likely end. Saw a FUNNY Phil brochure at the derm doc this week – they photo-shopped him to have a very skinny waist – we were laughing about why can’t they even show the real Phil?? Does Enbrel also make you fit? So funny.
I have RA and Sjogren’s, and I was most bothered by the comment about focusing on “getting better.” It sounded like these diseases are curable, and will give the public that idea too. It’s not a cold.
It is a good point. Only those who have lived throught this can know what that is like – my doctors (like many other patients have told me) said that I would “get better” and “run on the beach” and “get my life back” and a lot of other things – I mean the first dr when I knew NOTHING. And kept telling me “most people get better.” This is such an important point that I have included it in a talk I’m giving soon about patients role in healthcare.
I agree with (well, most things said here, but to start) Minnie; I too am frustrated by the “get better” comments. I try to look at it as Venus “getting control” over her illness & being able to do what she loves…though with that love being tennis (and in the sun) I am less than positive it will work out so well….
I understand a lot of the emotions expressed here about “why not discuss RA”…if I were being truly honest, I feel that way about Lupus a lot of times. But Sjogren’s is a basically unheardof disease (yes, I have it) and needs some time in the social spotlight, just like RA does. RA patients are frustrated b/c of the impression the word ‘arthritis’ creates, but I can tell you SjS patients are frustrated b/c IF we get someone to ask what it is (which they often don’t b/c they can’t pronounce it), they hear “dry eyes dry mouth” and that’s the end of the conversation. Respectfully, I think we (all of us) need to resist the urge to compare “my illness is worse than/more difficult than yours”, because no two patient experiences with them are alike, and ESPECIALLY because awareness of & support for one can help many within the autoimmune worlds.
The numbers I have from the SSF indicated that are believed to be (in the US) 4million cases of SjS, 2million of RA, 1.5million of Lupus, and 400,000 of MS. (That’s cases, not diagnoses.) Kelly mentioned different stats, so I don’t know where the truth lies…but again I’m not sure it matters. If the SSF gets more funding because of this (and I think they could, if only b/c the attention can help some of us get more people to attend our Walkabout and Sips fundraisers), drugs/therapies they fund development for could also help in RA (and Lupus and whatever else) if they attack a common mechanism. Our conditions are so alike, we can often ‘use’ each other’s treatment. But as an SjS patient, I have say I’m a little taken aback at the idea that it’s not OK for the news to focus on the one diagnosis she has without getting into RA or another AI. I don’t expect them to get into SjS when talking about Phil’s PSA, etc. I support the RA community, but I think it’s ok for the media to focus on one condition when reporting on a story like this.
Last thought – I realized…Phil’s diagnosed with PSA, Venus with SjS…both of them play sports in the sun (as opposed to probasketball for example). Anyone else notice this potential link or have any thoughts on it?
Thank you everyone, best wishes for a low-pain weekend ahead:)
My personal take on it was: “RA has some catching up to do. But we won’t do it by taking some of the sympathy that Venus generously deserves.”
So as I said on FB too, I think like you said, this is SS day in the spotlight and that Venus will become a good spokesperson. And that RA will have nothing to do w/it. And probably shouldn’t. This blog post was in written in reply to an avalanche of “Gee, maybe this will help RA” comments and I just looked around 24 hrs after the public discussion and said, “nope.” We still have the same work to do. Have you seen these stats from the ACR? Every researcher I talk with says there is just pennies spent on RA for every 5-10$ on rarer diseases – I’m hoping to print some stats soon that were quoted to me, but I have no links yet for sources so I have to wait. But for RA, which has a lifetime risk of 3.6% and an unimproved mortality rate, it is dismal.
The stats here are something I got from Mayo (source is linked) and refer to primary SS only – the very large numbers which I’ve read on the SSF site must come from somewhere else. My only point in mentioning the stats is to make this point: All the news reports said “rare” and it was odd to me that it was able to be explained to viewers by explaining it in terms of another dz that is just as rare (SLE). Why? Because there has been a ton of PSA’s on lupus and there is awareness of it now. Also as I mentioned on FB yesterday – I agree w/ you that the matter is still the same no matter what the stats are. RA is actually kinda common – yet no one knows what it is. Have you read the previous post about a rheumatologist who comes out strongly to make this point about how poorly RA patients are treated when they are disabled all because of the name and no one has awareness of what RA is?
Knowing what an advocate you are for SS, I thought of you as I published this. Yes, it is totally ok for SS to get the focus at this time & I never meant to imply otherwise. I just use every opportunity to highlight the situation with RA, since it is like I said stunningly dismal.
Dr. Akerkar posted the link to this video on twitter. It’s good to hear it from her. She explains her “getting better” won’t necessisarily mean what everyone else’s better or normal is, but she is planning on trying to play again (assuming the medications help her). It would be nice to know what medications they are going to try. Sounds like she’s already got lung issues from it in addition to the joints. Hope the meds help her with that part too.
http://abcnews.go.com/blogs/health/2011/08/31/venus-williams-withdraws-from-u-s-open-due-to-sjogrens-syndrome/
I did not see his Tweet, but the link is in my story I think already. ABC even put it on YouTube as well, but it’s non-embeddable – well it was a couple days ago, anyway
I think that it seems to me that when a so called “celebrity” is diagnosed with an autoimmune disease, its all over the news…I have RA along with secondary Sjogrens, and it irritates me when I see “celebrities” that are instantly cured from using a certain med…even though the disease that they have has no cure…..
I wonder why, if the news media is so concerned about Sjogrens, or any other autoimmune disease, they don’t do there research and seek out people that have dealt with these diseases for years.
I am sorry if I sound harsh but we all know how RA seems to be so ignored or misunderstood.
I hate that Venus is now one of us. She is strong, a fighter and while it will bring some attention to Sjogren’s, I don’t see it helping much. The media and the general public are just hungry for the latest bad news. As time passes, Venus and auto immune diseases will be down played and pushed back in the corner. We are used to it.
This is how my dx goes, primary R.A with secondary Sjogrens Syndrome. It just makes everything twice as confusing and more hurt for me emotionally and physically. This is such a lonely disease and everyday i wish i had somewhere to go where i could talk to people like me. I have learned most of the time not to talk about my disease because if i hear one more person say, Oh i have that!, or my whole family has that. I then ask them have they been to a Rhumy or what they are on and the answer is no i havent seen anybody for it. I know that they are probably talking about athriitis in there family and they have no clue what R.A is and i honestly get tired of educating everyone about my disease sometimes even doctors have no idea what Sjogrens is!
Unfortunately, there are quite a few celebs that have RA, however it isn’t something they will promote because it will keep them from getting jobs. In this aspect, they are just like us. If they are actors, they won’t be offered parts because of the possibility that it could delay filming and add to the cost of the film or TV show. It may not be “legal” but it happens, just as when we look for jobs, our signs of illnes can’t necessarily be hidden: the limp, the struggle to get in and out of chairs, being slow in writing while filling out applications because our fingers hurt. I was “surplussed” at the end of July and there are times that I actually feel guilty going in to interview because I know I will skew the heck out of their insurance costs and probably cause the other workers cost to go up next year.
I am a huge fan of RA Warrior and Venus. I was stunned and saddened about both Venus & Serena’s health issues. (I think Serena’s pulmonary embolism this year is due to lupus/antiphospholipid, which I have along with RA).
AI is a beast–I agree that the Williams’ sun exposure is probably flaring them both. RA/AI/Lupus need all the exposure we can get to them. Too many people are ignorant & uncaring about these diseases and their devastating debilitation.
The Williams brand is one of strength, tenacity, endurance, and grace under fire. I was that type of woman. now, like Mohammed Ali, a mysterious condition has completely altered any semblance of my former self.
These women have had the misfortune of being chosen to globally picture what AI does to young, smart powerful people…
There is one one quite well known monoclonal which, according to the preliminary trials seems to be effective also for the treatment of Sjogren´s syndrome, as well as for MS and some other severe autoimmune conditions, however, currently it can be used only off-label. As its patent will expire soon, the manufacturer is probably not enough motivated to go ahead with extensive trials.
From the other hand, TNF-inhibitors don´t help for Sjogren.
I do not have RA, but I suffer from what appears to be a Lupus/Sjögren’s overlap. Because of this, I am also interested in RA and scleroderma. It is true that our diseases are different, yet they also have a lot in common. I think that all autoimmune rheumatic diseases need and deserve more public awareness (including medical professionals) as well as funding for research that will lead to new treatments. Having a diagnosis of primary Sjögren’s can be tough. Some rheumys will not even treat patients if that is “all they have”. Others will only prescribe plaquenil, which isn’t always helpful. From the perspective of someone who doesn’t have RA, it does seem like you guys have been the main focus of drug research, with all of the new meds approved for RA in the last decade or so. Besides benlysta for lupus, there have been no new meds for any of the other autoimmune connective tissue diseases. We cannot use the biologics/anti-TNF, so we have limited options. We have to borrow from older RA treatments and drugs used in to prevent rejection after organ transplant.
I’m new to the site and wondering if anyone has ever posted about secondary Sjorgrens Syndrome, aka Sicca Syndrome, and biologics? I was using Etanacept successfully for 5 years but 6 months in, I started suffering acute sinus headaches but NO actual infection – which I decided was the case since all mucus was clear (sorry, too much information!). The headaches were so debilitating and no painkiller stopped them. Eventually I threw in the towel attributing the headaches to biologics ) I’d tried 3 types and they all produced the same reaction. Finally after 5 years a rheumatologist mentioned secondary sicca syndrome as the possible culprit explaining that my sinuses probably dry out overnight. This seems plausible as I wake up with a headache and my mouth is always bone dry, whether or not I have a headache. Anyway, what I have deduced now is that the biologics are not the cause of my headaches although they somehow make them worse. That seems likely because since stopping biologics (life has been RA Hell again of course) I have had only one ‘sinus infection’. I’m hoping to resume biologics (Golimumab) with Pred at the time of injecting to open up my sinuses and prevent the pressure which I suspect causes the headache. If anyone else is grappling with this problem, I’d love to hear from you, thanks.
I have ss and a bladder disease called IC it’s very painful . Slso have pudendal neuralgia . Has anyone heard of this . Or Ic and ss together . I read about it but can’t find anyone who has it . I’d love to talk to someone about ss . I’m getting so much bladder pain . Does anyone else get bladder pain ? I also have RA . The list just goes on . Out of it all my bladder pain is the most frightening . As. It’s burning day and night .