Venus Williams and Sjogren's

I am baffled by Venus Williams who claims to have been diagnosed with SS a year or so back but is at Wmbledon this weeks playing in both singles and doubles in the same day in hot sunny conditions.

As a tennis pro and SS sufferer of only 1 year I can't even hold a tennis racquet due to the pain in my bones,muscles and tendons let alone run around grunting and screaming with a dry mouth throat and lungs.

Can any one shed any light on what she takes?

She certainly does our cause no good by playing pro tennis at 34 with alleged Sjogrens as it reinforces the belief it is a minor irritation and not a real life changing/threatening disease.

Any comments? (tongue a bit in cheek)

It doesn’t affect everyone in the same way. Some have mild symptoms and others more severe.

HMMM....Interesting point. I wonder. I know when she was first diagnosed, she was doing all of those interviews talking about how debilitating it was. The exhaustion, the pain, the inability to train. I understand what you are saying.....it looks like she had a cold and got over it. I'm sure she has the best of everything available to her but if so, she should be continuing to talk publicly about what it took to get back into fighting form.

I know but she claimed it was so severe that she couldn’t play tennis was fatigued, pain in her shoulder was so bad etc a year ago now !

I hear you bud! I could not even sit out there and watch her play, I have no idea how she is doing it, though I have not been watching! I know she has severely modified her diet, but many here have! Like you say, she has the very best medical care available and personal trainers, but still, strength and stamina is something you cannot always purchase! I can only say that her 'fatigued' state is probably more powerful than our well state!

I also marvel at Phil Michelson, who has Psoriatic Arthritis and does the Enbrel commercials, I took it for 2 years, and I could never have even walked it with him! It helped the extreme pain, but it ramped the exhaustion and left me open to one infection after the other!

They make fabulous money, and it certainly must make a huge difference in the level of care available, they must also have the fortitude of an Ox!

Here are all of the discussions about Venus, and in a few she talks about her diet, and medical care. Let me know if anything 'clicks' for you, cuz I still don't get it!

http://forum.sjogrenssyndromesupport.org/main/search/search?q=Venus+Williams

I too have wondered this. But I am over fifty, like perhaps the majority who get the SS dx. And I have other AI illnesses she is young and this might be her one health problem. I’m just guessing…I DO wonder about hOw/if the vegan diet has helped her significantly???

I just turned 45 with symptoms that started well over 10 years ago. I also have primary SS. Even if she happens to be one of the lucky ones that has it very mildly right now, I'm sorry….she's hurting us more than anything by making it appear to the uneducated public that its something you can "get over".

Hate to say it but I was kinda happy she lost. LOL

I know she openly talks about having great fatigue when first dx’d. Could it be in remission? They say it doesn’t ever go in remission, but I’m not inclined to believe that. Maybe it is just not cOmmon. I saw her on the Dr Oz show. OMG! She tried hard to explain how there was more to it than dry eyes and mouth, but it went over like a lead balloon. I wish she would share what doctors / research led her to a VEGAN diet!?!!? I’m eating smaller portions of meat BUT the weird thing is if I eliminate it, I seem to slowly gain weight.

Nomad, I have that kind of system too….my body seems to need lean meats. I stick to chicken or a good cut of red meat (totally allergic to seafood & shellfish). I tend to be a little anemic too but I think its more than that. We all have systems that run a little differently but I look at Lions….if the King of the Jungle can run lean on a meat diet, why not me? LOL

Oh I agree that youth is an advantage, having the express attention of a top physician is another!

I have to have some meat too, it does help with strength and energy! Yes, the lean stuff, but I can eat most seafoods too, I'm fortunate there!

I am thankful for the celebrity faces on Sjogren's and psoriatic arthritis, both of which I have. While both of these athletes have been lucky enough to experience partial remission, if not complete, I hope that they can continue to do so. I have not experienced remission with either one, and just have a slow steady march forward with periodic flares.

For some people Sjogren's can be a complete and immediate life changer, for others it is a slower march. Nobody belittles those who have more severe disease. Who belittle those who may have milder or easier to control disease (not necessarily the same thing.

My friends mom has sjogrens also and she told me her fatigue went into remission for about 5 yrs but just came back. However, her sicca remained. I do agree that she should use her celebrity status to boost financial/research support. A couple people I know that do a lot with the SSF said that the CEO had to really really prod her to get her to stand up and say anything. Shannon Boxx has been more active than her. But Venus Williams is a bigger celebrity.

I’ve watched some of those vegetarian / vegan biased documentaries out of late and I do see how the constant demand for meat might be harmful for the environment and how it has probably led to these grotesque ranching/farming practices. And I also highly suspect that people in the US anyway, probably eat way more meat than what is needed and far too little vegetables than what is ideal. Whew…that was a mouthful! So, I’m trying to be aware and cut back on meat products, but not eliminate them and I’m eating a LOT of veggies. Very very little to no gluten. I’m going to see a famous nutritiIniat in my area for some more input. I just suspect diet can help. Fingers crossed! Oh, I’m glad Venus W supports us with SS , but I see the potential conflict. But…I did hear her try to get it straight with Dr Oz about fatigue, etc.

Sorry if we came off this way, Stoney. In no way do we wish to belittle anyone. If anything we are marveling!

I do think that the commercials for pharmaceutical drugs or quick fix surgeries make the general population think that if they can get well, and play golf or tennis, then we must not be trying! However, I'm all for treatment, and cure, and how better to present that than with success!

I'm a big fan of Phil Michelson, my Rheumatologist said he's done a lot for us, that before his Enbrel commercials, the average diagnosis time for PsA was 35 years, by the time I was diagnosed, it was down to 7 years, and surely it is even lower now. His new Enbrel commercial is even better as he tells everyone that there is extreme pain with PsA.



Stoney said:

I am thankful for the celebrity faces on Sjogren's and psoriatic arthritis, both of which I have. While both of these athletes have been lucky enough to experience partial remission, if not complete, I hope that they can continue to do so. I have not experienced remission with either one, and just have a slow steady march forward with periodic flares.

For some people Sjogren's can be a complete and immediate life changer, for others it is a slower march. Nobody belittles those who have more severe disease. Who belittle those who may have milder or easier to control disease (not necessarily the same thing.

Here's my issue with Her…..when she was first diagnosed and had to back out of playing she was doing lots of interviews etc. I googled her when this conversation posted and she hasn't done anything since. Either attach your name properly or don't. Its not belittling to recognize that most of the population has no idea what SS is or what we go through. If you want to raise awareness for it you can't act like its a cold that comes and goes. People misunderstand even further based on the little tidbits that they see, making it harder for the rest of us.

I see it with my rape victims on a regular basis. I can handle 200 cases in a row, then hit one that is a false report. Guess what happens next time I am in the precinct with one? We are back to square one and that is with well educated people. And how often do the spectacular false reports hit the news. One bad one can make things much much harder on the real victims….people develop impressions of something very skewed bits of info sometimes.

I would never wish this on anyone, ever. But don't reduce what we are going through either.

found this - not much info or any description of how she has managed to resume playing pro tennis at the French and Wimbledon this year

http://info.sjogrens.org/conquering-sjogrens/?Tag=Venus+Williamsf

this is her website - all fashion and self publicity.

http://venuswilliams.com/

This is the only page I can find on her SS

- not exatctly useful _ I am veggie and have been for years - there is no evidence anywhere to suggest bein a "cheagan" makes any difference - what are the daily meds?

Not biologics as they aren't daily.

http://venuswilliams.com/sjogrens-and-bear-it/

It would be nice to know what has converted her from pain and fatigue to playing 6 sets in a day - I want some too!!!!

Me too, a truckload of it!

Not everyone with ss suffer the same daily symptoms . I have more good days than bad days. Before I was diagnosed which was four years ago, I was in constant pain but with the help of medication, self medication and some exercise my pain is managed. The fatigue is my biggest bug bear this can come at anytime and can really wipe me out. I have fallen asleep in some strange places in my time.

I feel very saddened to hear about how the disease has progressed in you. I have to say that I feel lucky that I lead a very active life and work full time in a profession with a lot of stress from time deadlines. I do have bad days and my parotid gland gets infected on a regular basis but for the most part I have a normal life (now I am dealing with cancer). I did cut way back on my hours. I left a stressful job. I changed my eating habits. I refused to take plaquenil and started on various supplements. So although I do not currently have the experience you all have had and am concerned that it could get there, I can see how she may be (1)having a “remission” of sorts and (2) exhibits incredible perseverance not to be sidelined by disease. I am sure it is not easy. We should be thankful she has figured something that works for her.
We should focus on figuring out how to develop therapies including integrative and complementary medicine specific to sjogrens.