Hi.......There is an article about Venus Williams and her problems in the Telegraph today. It beats me how she can be in the finals at Wimbledon and I can just hobble down the road ! It also tells the story of young Judo athlete with a similar tale. She credits a vegan diet for her eventual return to Judo.
The article is quite good but of course it is only half the story....no drugs mentioned apart from😢 anti inflammatories , eye drops and saliva stimulants.
I have MCTD and Sjogren's. Two friends rang and told me they had been watching Venus AND SHE HAS SJOGREN'S !
Perhaps I'm not trying hard enough !😥
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Or maybe you need enough money to be able to employ a cook to do the raw vegan diet that Venus also credits with her outstanding management of Sjogren's.
Point out to your "friends" that you also have MCTD - and I suspect VW wouldn't have got to the Wimbledon final with that mix. Even eating a field or two of raw vegan products...
Or, everyone is different. I only have the barest knowledge of Sjorgren's but, on the basis of Lupus and Antiphospholipid Syndrome - both of which I have, there is huge variation in people's symptoms, how severely they are affected, the extent to which fatigue is an issue; the latter may not correspond with severity of other symptoms.
Plus, I would imagine that Venus Williams uses some of her money to see only top doctors for her condition - as often as is required and for as long as is required. I am always sceptical regarding the advocation of 'miracle' special diets by the rich and famous. I recall a very amusing article by a well known female journalist who, sadly, could not name names for fear of being sued but who in the interests of research went to one of these non-invasive plastic surgery places. She wrote that she wished she could list the famous faces that she saw there who in interviews always credited their unlined and youthful looks to diet/specially formulated powders/special forms of yoga, etc!
Yes I have often doubted thes people's claims. Unlined faces after about 50 are a bit spooky. And immobile !
Okay well here's my tuppance. I was quite a fan of Venus on Friday. Sure I'm feeling rubbish just now but I also know that I'm on a high dose of powerful immunesuppressant and have hypothyroidism - maybe these are responsible?
Come Saturday I woke after another yet awful night to a day of no dogs and a plan to have a day of exhibitions and Ikea to purchase cheap frames. I was a bit disappointed that I wouldn't be watching the women's finals but hey ho.
But the moment my feet touched the ground I knew that my day was doomed! My eyes were unbearably dry and I had to unstick them with three lots of drops. My skin was bleeding on the roof of my mouth where my tongue has become glued overnight for lack of spit. Every bone and tendon ached from head to toe. And the feeling of leaden fatigue.. well how would I manage to get through all this??!
And after a few hours of sticking a brave face on for my husband I crumpled like a pack of cards and admitted defeat. So a rather grim faced husband brought me home where I staggered up bed while he made us a cuppa and turned on the tennis in the living room next door - expecting the game to still only be half way through, if that.
As I lay there feeling utterly demoralised, pain ridden and guilty and full of deep and uncharacteristic bile towards Venus, I became aware that all was not going expected on the court. "She's just lost!" exclaimed my husband. Then I heard McEnroe speculating on whether it was her Sjögren's Syndrome or her advanced age or the impending court case she's facing that were responsible for her total lack of mojo. And I just couldn't decide what to feel or think about her - felt very sorry for her then mean and vengeful in turns - before sinking into a really unsatisfying slumber.
I still don't know what to feel fine honest. I read a long and and furious FB thread on a closed group I never usually look at - started by a man who has Sjögren's and seems to hate everyone and everything a lot of the time.
He maintains that she cannot have Sjögren's but rather once had ME or Fibro. He believes that she bought her diagnosis of a serious autoimmune disease in order to get put on Prednisolone and possibly Rituximab (although this wasn't listed in the Russian hacked health files - just Pred). He says the super rich can buy anything including a diagnosis of an autoimmune disease. All pretty nasty stuff I felt. But the point he and others were making that she just absolutely can't have the incurable and progressive Sjögren's does strike a cord with me too I admit? She doesn't take beaks for drinks, she can sweat for the USA, no eye drops in sight - or signs of fatigue or joint pain. No hat to shield her from the effects of UV rays. How is it possible that she has Sjögren's or any other rheumatic disease????? Answer: it just cannot be!!!
And contrary to what Pro says - Sjögren's is invariably quite enough of a disease all by itself to mean that most will suffer too badly to entertain playing tennis even once a week for just recreation - let alone at elite level. And I was a racket sports lover for many years myself until my RA-type symptoms started (after a game of badminton with a friend actually!)
So although the tone of the angry FB poster was very unkind I do have much conflict about Venus actually having Sjögren's. And despite my usual deep dislike of these kind of disrespectful speculations about someone's own private business - I do admit to a real yearning to see how exactly Venus met the ACR diagnosistic criteria for Sjögren's Disease in black and white for myself.
But in the likely event that I'll never know whether she is the exception to the rule - and bearing in mind my own horrible version of this disease - I'll definitely have to try vegaism and 🤞🏽🤞🏽🤞🏽🤞🏽🤞🏽🤞🏽🤞🏽. I've tried almost everything else diet and drug wise already to no avail. Maybe eating raw veggies day in day out will bring me a miracle and I'll win the Turner Prize next year??!
So Bones-Bones - you certainly aren't alone with these thoughts and in wondering about Venus - she makes many of us feel like complete failures. And for this I do curse her For ever telling the world she has Sjögren's in my darker moments I admit! X
Hi there ,i quite agree with what you say. I'M VEGETARIAN almost vegan and feel absolutely no better for it. I had to give up biking and i certainly could not play tennis even for fun ,so i guess she must be on some sort of miracle treatment. Elfie
It can't be done! There is another American athlete, Shannon Boxx, who was diagnosed with lupus (eventually) and has played on the American women's national football team in the World Cup and the Olympics. She's battled with symptoms since high school, which progressed. She's now working to spread awareness of lupus, and openly discusses her symptoms and having to take steroids and immunosuppressants. For me, it's actually encouraging to hear that others with autoimmune diseases like Sjogrens and lupus can battle through and not let these diseases win!
That's exactly why I say that one day I'm inspired by Venus - the next day despondent over her. I think half the reason that I'm in the process of applying for a PhD is to push myself mentally in the way that Venus pushes herself physically. But as someone who occasionally reads posts on Sjögren's forums, many feel she doesn't really help them as an awareness raising ambassador by implying that she manages by veganism alone.
Horribly - it seems her medical notes were hacked and the drugs she takes were listed and include regular Prednisolone - which is also known because she has to declare herself an exception to be allowed to take it by the sporting authorities on medical grounds.
So I think it's the feeling that she's promoting this idea that veganism alone gets her by that upsets a lot of sufferers. I'm firmly on the fence because I know I'm going to struggle to undertake a PhD and I would hate friends and family to think I'm making a mountain out of a molehill about my health just because I'm prepared to give it my all. Most people I know never mention Venus and apppear to have a good idea about the huge variability of autoimmune diseases.
However I donhave Stephen Hawkins there in miniature - all ready to flag wave for his superhero status if needs be!! If I get sorry for myself I just have a chat with him in my head and all is fine again!
To be fair, Shannon Boxx actually work's with the Lupus Foundation of America to spread awareness, as she is now retired. However, she didn't tell her her teammates for a while. Venus is still playing tennis professionally, and is not representing Sjogrens patients in any official capacity. I doubt any professional tennis players would discuss publicly the meds they are on- it's a touchy subject.
I suppose the debate reflects the lack of awareness of Sjogrens more than anything else, if the general public has only have one reference point to compare to! (Or just a few angry people on Facebook). It shouldn't all be on her shoulders.
There are also several forum members here who swear by various diets for lupus, which don't work for everyone. There are others who simply refuse to take steroids or immunospupressants.
Hi Twitchytoes......sorry you're feeling so awful. Where do you get the face brace...I could certainly do with one today ! You take Mycophenolate don't you. I'm not very happy about being on all these drugs but but when I asked if I could cut down the Mycophenolate dose the answer was a very firm no.
As for Venus Williams. I've got the advanced age, the Sjogrens plus MCTD but luckily not the court case. I always feel a bit apologetic on this board that I don't have Lupus as that must be worse. Somehow Sjogren's feels like a bit of a feeble problem to have in comparison. But what with one thing or another I sometimes feel like retiring hurt to my bed for a long time.
I expect I'll feel better tomorrow. I hope you do too.
Well at risk of turning into the very angry fella on the FB group I told you about - I have to say that, from reading and researching lots as I do, Sjögren's is an equally serious rheumatic disease to Lupus and all the others. Like Lupus some have it mildly where others have the very serious multisystem version. I guess I'm somewhere in between.
I mean to say how can a disease that dries up your entire system like an internal drought not be pretty serious - whether primary secondary, overlapping with MCTD or UCTD or RA or Lupus or not?!
It can and does go for the lungs, liver, kidneys and brain all by itself, and unlike Lupus or the others, it puts primary Sjögren's sufferers at a significantly greater risk of getting non Hodgkins Lymphoma than any other disease.
But unlike Lupus we have no UK sufferer's HU yet and only one very dedicated Sjögren's specialist in the U.K. So some of us come here and use the NRAS HU because it helps. No one seems to mind too much but I'm very grateful to LUK nonetheless.
And I'm only 54 and am fairly confident I've had Sjögren's since I was young so, even if the RA returns or Lupus or Scleroderma are added in later as could well happen - I know that Sjögren's is a really evil and deeply misunderstood disease all by itself for me.
And it was brave not brace of course - addled fool in bed that I am - I should always check before sending!! I suppose I'd like Venus to be brave too and tell us how she really does it.Xx
It's all relative, isn't it? Venus has been an elite athlete since she was very young, and was very fit before she got ill. (Still is very fit, obviously, since she made the finals!). If her Sjogrens causes her to function at, for example, 75% of her normal self, that is a lot different than the average person's 75%!
Yes in fairness - she's only 37 and has only been diagnosed with Sjögren's for a relatively short time (2011). So assuming she was correctly diagnosed in the first place (no signs of classic dryness on camera at all) then perhaps the worst is still to come, elite athlete or no? In which case I can only say poor, poor woman. 😖
Yes . I apparently have had SS for ages. I was only diagnosed on a routine blood test. At the time I was recovering from breast cancer and was quite unaware of anything else. When I did get to see a rheumatologist I told I wouldn't need to see him again as the place was full of elderly ladies with gammy hips and knees. However he insisted and things began to go pearshaped gradually. Now I'm doing pretty much bugger all like Bubblemonkey!
It's hard isn't it. I'm doing loads but it's crippling me now so BubbleMonkey's comment has been a wake up call. Tomorrow I'm off to Glasgow for an afternoon board meeting for my volunteering work for the NHS. Even my husband is worried about how I'll cope and I've got a Sjögren's kit bag along with an AIP lunch - plan not to take my 3 MMF tablets tomorrow morning because I can't risk the nausea or tummy pain - both sons coming to meet me after the meeting to get me safely onto the train home. Then I'll have a few more days of total wipe out as the price I will pay. All this just to attend a 2 hour meeting! X
I've had this struggle before. I read stories regularly back when I was diagnosed with fibromyalgia about a bodybuilder who had lupus. His story was lauded all over the place as the inspirational disabled-person-climbs-Himalayas-in-a-wheelchair story as motivation for Not Being Lazy. Because if HE could do it, none of us had an excuse not to. So...I tried. And I made things infinitely worse.
Venus has a condition which, in her case, has the best doctors her money can buy, in a country which is willing to spend top dollar on treatments. She can get a chef to make her meals for her, and can dedicate her life to her sport. If she has a case of Sjogren's, it's more than likely mild. Combined with her already incredible genetics and...there you go.
It's like saying all healthy people can run like Usain Bolt. They can't, can they? So why is illness any different? No two people are alike, no two people are alike. All I was doing was comparing my undiagnosed, not-even-remotely treated illness to someone with a milder case of illness who had the full backing and support of a medical team, personal trainer, and fitness coach to later start training for the pros.
I wish you peace, and the clarity to recognise you too, have skills no one else has. Because we're all used to our own lives, we tend to take these things for granted. The Dutchman is trilingual, a feat I find utterly astounding as I am terrible with languages. To him, it's like breathing. I have musical friends who can read notes - something I never learned to do. I have perfect pitch, and (at one time, before cognitive mess) an IQ over 180...and to me, neither of those things is particularly interesting or important.
Don't compare yourself to anyone else's experience to find yourself wanting. You're here. You're alive, and you are enough, just as you are.
I know exactly how you feel. I found out that Selena Gomez has Lupus and MH issues while she's off doing tours, recording music, acting etc wile i'm sat here in bed having managed to put on a wash today.
I worry quite a bit that I'm just not trying hard enough and I'm lazy, but there's no point in comparing yourself to others in that way. It's not helpful to you. What you should be doing is trying to be the best you for your own sake.
Any illness is on a scale and they may just not have as serious cases,
they may also have better access to various forms of support (like
through private insurance/ money) and things like that. Also, looking at
famous people they seem to have a habit of taking on too uch pressure
and working themselves into the ground. They may look like they are
doing really well, but that might just be a mask.
I managed to do a
shocking amount when I was probably suffering with the same stuff as I am now. I wondered at one point how on earth it was possible considering how little I can do now and then I realised what happened in between- I was so depressed that I was approaching being a risk to myself. I wasn't doing well back then. I was doing far too much and driving myself into the ground. I just didn't realise it for a long time and from the outside perspective I was doing brilliantly.
I may be doing bugger all now, but at least I'm not crying myself to sleep at night battling unhealthy thoughts and urges. My life now is arguably so much worse than it was and yet I'm so much happier. Sometimes I have to remind myself of that.
I agree with you. The Williams sisters were always put under enormous pressure by their father (I think is the story, though I'm not a close follower) and once you are on the high achievement kick, it's hard to get off.
Sometimes our bodies just need to rest. Maybe in a few years something will give.
Sjögren's symptoms sound really horrible to manage. Not surprising you feel defeated sometimes.
The thing about the media is that - and I hope Lupus UK is onto this - that if someone famous goes on about a disease, even if it's in not a helpful way, you can tag along for the ride and get articles in the paper on the back of the news story. That could raise awareness in quite a useful way.
Agreed. None of us knows what goes on in her off-court life. We all cope with our diseases differently. There have been posts by some members of this forum saying they can still run 10km or lift weights, while others can barely go up the stairs.
Besides, how many of us on this forum have complained about people in their lives (doctors, family, friends) not believing that they are ill, or that their symptoms are not severe? Let's not do that to each other!
Well I never could run 10k so that could be an explanation !
Yes this is always my conclusion too re meanness. This kind of speculation and self comparison brings out the worst in all of us I feel, very much including me.
But nevertheless it's a difficult idea to process because commentators and the media are suddenly talking about this Sjögren's Syndrome a lot on the tv and in the media just because of Venus. And of all the rheumatic diseases, Sjögren's is the most underestimated as a stand alone disease - even by those who have it in secondary form - even by a few people here.
There are no targeted treatments and many doctors just don't address it at all - never even mention it even. My last two rheumatologists certainly never did - they only focussed on my misdiagbosed RA.
And for those of us brought very low by it - struggling with side effects of powerful immunesuppressants or Rituximab if we are lucky - it's is inevitably going to be rather hard to watch an elite athlete with the same disease seemingly breeze through to the final of Wimbledon before finally crumpling at the last hurdle. On one hand she's inspiring - on the other, an obstacle to raising greater awareness about how debilitating and potentially serious Sjögren's is. That's me done on the subject though - Venus has enough on her plate.
And at the end of the day, as a lovely woman reminded me during a coffee break at work today - it could just as easily be Lupus or RA or MS because all these diseases sit on a vast spectrum and are as variable as the day is long.
Ugh she does sound terrible to me too! I guess I did have to come off all drugs for a while to get my diagnosis from clear positive ANA and 100% positive lip biopsy. The tear break up is the most reliable one for eyes if you aren't on meds at the time - any high street optician should be able to identify sicca correctly x
You are trying !!!! Hobbling as you say down the road takes immense amounts of energy and courage to get out. Oh disease is horrible and takes a lot of effort everyday. Do not be had on yourself, you are the hero coping day to day. Newspapers print a load of lies. "Celebrities" illnesses mmm! We are all different, autoimmune disease is complicated and someone could show markers for disease but very little symptoms. Unfortunately people read stories and thank oh my friend has that and she's always ill, as if we're making more of it. Don't listen we are all warriors fighting everyday. As for the fancy diets etc. If it works for you great, but a balanced healthyish diet is best. All the best, keep fighting. XXX from a fellow hobbler
Interesting debate about Venus Williams!. I would like her more if she was more willing to publicise Sjogren's but in an interview before Wimbledon it was stated that she doesn't like talking about it, if anything she's in denial about having it!.
Comparing ourselves to others is not helpful. We all must cope and battle in our own way as we're all suffering differently despite appearing to have same illnesses. X
Venus is an ambassador for the American Sjögren's Syndrome Foundation (but the angry FB man said that this was reluctant - only agreed because she felt obliged apparently). I think what bothers her fellow sufferers most is that she sweats a lot and most with SS can't, she never seems to apply eye drops and she never sips any water throughout a match - so this leaves sufferers wondering how this is possible with a disease which has hallmark of the body's immune system attacking our Exocrine glands.
I'm saying all this because I do read rather than contribute to Sjögren's forums and I do know that it impacts on sufferer's life's just in same way as Lupus does - so by degrees and some have full active lives still but many more are in the opposite boat. And there are many saying same as you are back to the angry man.
And personally, although it would be very helpful if she did tell us more, I do really feel that the way her disease manifests and the way she manages it is entirely her business. As you say she's going to be very guarded about discussing drugs she takes and after the Russian hackers debacle (another awful part of being rich and famous), extra vigilant about guarding her privacy.
Anyway it's something of a relief to me that people are talking about Sjögren's as a multisystem disease not as the dry eye and mouth disease at all - but along the lines of Lupus with aches and pains and fatigue as the hallmark symptoms. As someone who was initially misdiagnosed with RA I know how easily our diseases can be misdiagnosed or change over time - but sicca is the most ubiquitous symptom to Sjögren's nevertheless so it's quite odd to see or hear no reference to it at all.
But as we have cameras on her close up all the time during each game I can see that those of us who struggle most with sicca are going to want to know her magic ingredient and if she hints at veganism only (as she has so far) then we inevitably wonder why we are filling our bodies with drugs that make us feel lousy and may not be helping - while this stunning athlete is glistening and glowing with beads of heslthy sweat and not sipping at a water bottle or administering eye drops or protecting her skin from the sun with a cap (the Lupus side of Sjögren's affects many of us too).
Heck that's me done on talking Venus now. I'm sure I'll have the brain fog brigade amongst my acquaintances doing same about me how I can undertake a PhD when I'm supposedly too ill to get a regular paid job. So really and truly I'm keeping Venus in my head as a role model for my own intellectual endeavours! X
I stand corrected. Yes she is the chairperson for the foundation's ambassador program, which is a group of volunteers that distribute leaflets to doctors and other health professionals in their communities. I don't think that's the same as a spokesperson type role. As for her reluctance well that seems like a bit of speculation on angry FB man''s part, unless he has some insider information. Venus wears a visor (even before her diagnosis ) and piles her hair on top of her head - it wouldn't fit under a cap! In any case I don't think we should be comparing ourselves to athletes we see on court for a few hours every few weeks, or to celebrities. We don't know what goes on behind the scenes (unless, it seems,you are angry FB man) and we all are affected by our diseases to a different degree.
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