Venus Williams has a disease called Sjogren’s Syndrome, is out of the US Open


Tennis star Venus Williams is the older of the Williams’ sisters and the one who is known for her risque fashion. (I don’t pay enough attention to sports and I sometimes confuse her with her sister, Serena, which is why I’m specifying.)

Venus was formerly ranked No. 1 in women’s tennis in the world and she’s now at 32 in singles and 20 in doubles, so she’s force to be reckoned with. Her health has led her to be sidelined, though. Venus just pulled out of the US Open and made an announcement that she was diagnosed with a disease called Sjogren’s Syndrome.

In an interview on Good Morning America today Venus said that she felt for years that her stamina was low no matter how much she trained. She explained that about four years ago she felt like she could never get enough air in her lungs. She was diagnosed with exercise-induced asthma at the time. This year she experienced joint swelling, dry eyes and dry mouth as well as fatigue and peripheral nueropathy, which are all symptoms of Sjorgen’s. She explained that it normally takes six and a half years to get diagnosed with Sjorgen’s.

I think I’ve had issues with Sjogren’s for a while. It just wasn’t diagnosed,” Williams said. “The good news for me is now I know what’s happening.”

Sjogren’s is usually triggered by an infection. The symptoms vary, but usually include dryness in the mouth and eyes, joint and muscle inflammation, and fatigue.

“I had trouble with stamina,” Williams said, adding that her doctor diagnosed her with exercise-induced asthma four years ago. But it wasn’t until this summer, when she developed more definite symptoms, that an accurate diagnosis was made.

“I had swelling and numbness and fatigue, which was really debilitating. I just didn’t have any energy,” Williams said. “And it’s not that you don’t have energy; you just feel beat up.”

Deciding to drop out of the U.S. Open wasn’t easy, Williams said.

“… I just felt like, ‘Okay, I could walk out on the court. I’m a tough woman, I’m a tough athlete, I’ve played through a lot of things.’ But what kind of match it would be?” she said. “It was a tough decision, but at the same time I’ve had to come to accept what I’m going through.”

Williams said she’s glad to finally have an explanation for her mysterious, debilitating symptoms.

“It’s a huge relief because as an athlete everything is physical for me — everything is being fit and being in shape,” she said. “I think the best thing that could have happened for me this summer was to feel worse so I could feel better.”

While Sjogren’s has no cure, there are treatments that make symptoms more manageable: Artificial tears and saliva stimulants can ease dryness; anti-inflammatory drugs can reduce joint and muscle inflammation; and certain drugs can help quell the overactive immune response.

“Sjogren’s is something you live with your whole life,” Williams said. “The good news for me is now I know what’s happening after spending years not knowing… I feel like I can get better and move on.”

Williams said she “absolutely” plans to return to tennis.

[From ABCNews.com]

I’ve had health problems in my life. I’m doing great and am hopefully fully recovered now, but years ago there were months when I could barely get around the house and needed a wheelchair outside. So when I hear about health problems I think I get it. I don’t fully remember how bad it was to be that sick, but I was there. It can be awful when your body betrays you. For an athlete, it must be especially devastating. I hope that Venus is able to get the treatment that she needs. I found her story very well told and she sounded like she’s come to terms with it. She will surely bring more awareness to this disease.

You can learn more about Sjogren’s on the website for the Sjogren’s Syndrome Foundation.

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Here’s Venus playing tennis on 8/29 and out with her dog on 8/10. Credit: WENN.com

 

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41 Responses to “Venus Williams has a disease called Sjogren’s Syndrome, is out of the US Open”

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  1. Mia says:

    Glad you’re feeling better, CB!

    I’m also heartened to hear that Sjogren’s is manageable. When I first heard she had an autoimmune disease, I thought she might have Lupus.

    Hope she’s feeling better and back out on the courts soon.

  2. brin says:

    Wow, that’s awful, I’m glad this disease can be managed, hope she will be well. Glad you are doing great, CB!

  3. gillie says:

    Her sister Serena had a stroke this year.
    Not a good year, healthwise, for these sisters. Hope they both feel better and get the treatments they need.

  4. jc126 says:

    Best wishes to her and a hope for long life and happiness. I hope the Sjogren’s doesn’t mean she’ll be hit with more devastating problems down the road; I knew a lady who had it who also came down with all kinds of serious problems and died at 41.

  5. jen says:

    I’m glad she was properly diagnosed. Prayers for her.

  6. Original Tiffany says:

    Serena is the one who dresses all crazy. I feel badly for both sisters really. They’ve had a rough go with injuries, their sister was murdered, Serena was out most of last year and now this. They were amazing both as singles and doubles players.

    I’ve missed you guys-had to fly home for a death in the family (very sudden) and I missed my little CB community. :)

  7. GradStudentEatingHotPockets says:

    As a former college athlete…it really is one of the worst feelings in the world to have an illness or an injury that sidelines you. It really does feel like your body betrayed you. You work so hard, you eat well, you get your sleep, you take care of yourself…and then BAM. You’re injured/sick and there is nothing you can do. Plus you have the pressure of having your teammates/coaches/parents/everyone else in the community NEEDING you to get better that it feels awful.

    I’m glad she has enough respect for her body to pull out of the competition for now. It’s better to pull out and get better than to stay in and just keep damaging yourself.

  8. MollyB says:

    OMG! I just watched an episode of Mystery Diagnosis about this very syndrome yesterday!

  9. Celebitchy says:

    I’m so sorry for your loss Tiffany.
    Well I was sick about 8 years ago and while I have had a couple of setbacks over the years I’m fine now! I just think the point I was trying to make is that once you face serious health problems your outlook on life totally changes. It’s like a sad little club where you understand it when someone discusses their health problems. Venus said something similar in this interview about when Serena had a blood clot.

  10. Faye says:

    That’s a horrible disease, my heart goes out to her. My mother’s cousin had Sjogren’s. All auto-immune diseases and syndromes are rough, but this is a baddie. I have an auto-immune disease myself (Hashimoto’s) and while we were testing to figure out what was wrong with me, we were praying so hard that it wasn’t Sjogren’s. Thoughts and prayers to her.

  11. mln76 says:

    They’ve been through a lot on and off court they had another sister who was shot and killed as an innocent bystander (I think). They are both crazy dressers but I have an affection for their ghettofabulousness since tennis is such a stiff sport.

  12. attawodi says:

    i pray she gets better n get back 2 the lawn court… its sad not 2 be able 2 do wat u luv 2 do u knw.

  13. original kate says:

    how sad. she is still anamazing athlete, though.

  14. Jackson says:

    So very sad for Venus, she’s one of my favorites. I have autoimmune problems too and it sucks. Overwhelming fatigue, weird nerve issues, pain. I seriously hope she can deal with it all better than I have because the lows can be really tough to dig yourself out of. Best of luck to her and to everyone here who deals with health-related crap. It sucks. :(

  15. the original bellaluna says:

    Oh, Tiff, I’m so sorry.

    I’m thankful Venus came out with this. The info is invaluable, as I’m sure she’s not the only one to suffer from this.

    And seriously? 6 YEARS to diagnose properly? WOW.

  16. rosmarina says:

    I have a good friend with lupus and Sjogren’s. It’s a lot to deal with, but she does her best to take care of herself and eat well and that makes a big difference. I’ve had some issues with mouth and eye dryness before, but thank goodness they went away. The mouth dryness is unpleasant enough itself, but also can cause serious dental problems. I wish Venus well. Getting a real diagnosis itself has to be a relief – now she can move on to learning to live with it.

  17. Kloops says:

    Feel for her. That’s a rough disease to live with. Yes, there are worse, but it’s still no fun.

  18. I have a very Dear Friend who was diagnosed with this disease.He was my very first friend when I entered the horse business,and he still is dear to my heart to this day. I wish Venus all the strength and courage she’ll need to fight this disease.God Bless.

  19. Cheyenne says:

    I never heard of this disease before. I hope she succeeds in overcoming it. Even if she never plays again, she has already made her mark as one of the best tennis players who ever lived.

  20. KateNonymous says:

    This must be devastating for her–but I’m sure it is easier to at least know what’s happening, because now she can get a better sense of what her options truly are. And good for her for being open about it as well.

    And on a frivolous note, her dog is adorable.

    Actually that’s only kind of frivolous. Because when I see a person with a health issue, and they have a dog, I think, “I hope that dog is as good for their health as mine has been for me.” Because right around the time my blood pressure started to go up during my pregnancy, we adopted a dog (it was a coincidence–we weren’t looking for a dog, but a stray followed my husband home and none of our efforts to find her owner were successful so we kept her), and she really helped keep me calm and keep my BP under control. So I hope Venus is able to benefit like that as well.

  21. djork says:

    LOVE the Williams sisters. Godspeed, Venus!

  22. Jessie says:

    I have diffuse scleroderma with overlap lupus and sjrogren syndrome and hypothyroidism. It’s a pain in the ass but it is manageable with anti malaria drugs like plaquenil (amongst other things) and monitoring from a good rheumatologist (I have 2). It feels like you’ve been run over by a truck, and there are day my eyes are so dry an itchy I feel like clawing them out. I’m able to lead a fairly normal life as I’m young and take care of myself. I hope Venus can have a normal life too, she is an athlete so it puts her in a better position physically to deal with the disease.

  23. Violet says:

    I think it’s great that she’s being open about her condition. That not only helps others understand what she’s going through, but might help some people unknowingly suffering with the syndrome get diagnosed.

    My heart goes out to her. (And to you for your past struggles. I’m glad you’re better now!)

  24. shane says:

    This condition is an MS mimic.

    The fact that she is now an occasional wheelchair user, ostensibly due to progression, is really scary. Her attitude, however, is fantastic and will serve her well (pun intended)

    Best to her.

  25. Nanea says:

    Poor Venus!

    These kinds of autoimmune diseases are really awful to deal with, and while she sadly won’t get better, I’m keeping my fingers crossed she won’t get worse for years to come, that her docs know what they are doing, and that she won’t be among those who are diagnosed with a clinical depression down the road.

    All the best from a fellow sufferer – Ankylosing Spondylitis ended my career as a ballerina.

  26. XiuFetish says:

    Mia, you must not watch “House”. It’s never lupus.

  27. Bellabumbum says:

    I’m so grateful she has brought attention to Sjogren’s Syndrome. It took over a year for me to be diagnosed with Lupus and Sjogren’s. The fatigue is horrible. It is a long road…very challenging to balance your life when you have no energy. I can’t even remember what it felt like to feel normal. The hardest part is learning to be gentle with yourself, and not overdo it.

  28. Original Tiffany says:

    Thanks guys:) I appreciate it, a sudden death in the family is devastating to those left behind.

    I’ve been really sick in the past, battled it for a number of years and am now finally climbing out of the pit.(@Faye, I have Hashimoto’s as well) It’s a drag to be sick and feel crappy, I am an athlete too and it is frustrating. Autoimmune diseases are a bitch to diagnose, often takes years. Runs in my mom’s side, lupus, thyroid disease, fibromyalgia. They are still among the most misunderstood diseases. I’m glad I retired from medicine-I can’t hack the sadness anymore.

  29. Samihami says:

    Last year I had some awful symptoms and wound up having surgery to have a salivary gland removed. They still haven’t come up with an actual diagnosis. Sjogren’s was suggested as a possibility but was not confirmed. The doctor told me that I will probably be diagnosed with some autoimmune disease in a few years when I get worse.

    The real bitch of it is that I cannot get health insurance; I keep getting rejected because I have an autoimmune disease, but I’ve never actually been diagnosed with one!

  30. neff says:

    I have Sjogren’s and a few other autoimmune disorders. They are miserable diseases/syndromes/disorders and it is not uncommon to have more than one. I tend to cringe when I hear the word manageable. It doesn’t that mean you feel o.k., it just means that you are not terminal. Managing such disorders is very difficult and sometimes ineffective.

    Any long term use of any oral anti-inflammatories generally creates serious gastointestinal problems. Many drugs that supress, (“quell”) the immune system, can have other horrendous side effects. As for nerve pain, A.K.A. peripheral neuropathy, treatments can also have terrible side effects. I gained 50lbs.in 6 weeks on the gabapentin that was prescribed for that.

    The long term, and I mean decades, of dry mouth has resulted in my date with the oral surgeon who will extract 15 of my lower teeth next month and, at least as many of my upper teeth, a few months later.

    As for the dry eyes, even the mildest presciption artificial tears, drops, etc. caused severe burning and pain in my eyes. I paid thousands of $$$$ out of pocket to get the best OTC drops. Eventually, I had 7 surgeries on my tear ducts to keep the ducts permanently open so that my eyes, would not be permanently damaged.

    The relentless fatigue, impaired mobility and constant joint and muscle pain are a lot of fun too. Also, autoimmune disorders tend to be progressive, so… Yeah, managing this stuff is REALLY EASY.

    I truly hope that Venus and everyone else is doing better than me. I also hope that a cure is soon found. If you haven’t been properly diagnosed, do your own research and never let some incompetent, misogynistic, asshole doctor, (of which there are many), tell you that it’s all in your head.

  31. dj says:

    All my prayers and well wishes to Venus. I (like others) am so grateful that she has “come out” with her Sjogren’s diagnosis. I was recently diagnosed with it as well. It really does feel like you have been hit by a truck. You really do not realize how important saliva is until you wake up choking because you cannot swallow. @ Neff please keep your chin up. You are not alone. Celebitchy is great and has kept up my sense of humor through this tough year. Thanks to Venus and everyone here!

  32. paleo diet says:

    Venus and her sister are absolutely ghetto-fab — I hope they both feel healthier soon.

    The male tennis player Djokovic went on a paleo/gluten-free diet and dominates tennis now… My siblings and I have all had a autoimmune disorder, similar to lupus/Sjogrens/RA and one sister has neurological/mental issues that are gluten-derived.

    These conditions are highly associated with gluten and dairy/casein consumption. Calming the immune system, destroying the circulating immune complexes (digestive enzymes) and immune support are vital for disease reversal. Unfortunately modern medicine is unaware of how to prevent or reverse disease progression in autoimmunity.

    Avoid:
    –gluten (wheat, ‘whole unhealthy grains’, rye, barley, oats/cross contam)
    –dairy
    –canola, corn, soy
    –oil from canoloa, corn, soy
    –toxins (pesticides, heavy metals, mercury, pthlates/plastics, PCBs, parabens) because trigger autoimmunity
    Boost:
    –mercury/toxin free omega-3 fish oil to improve immunity
    –vitamin D (everyone esp dark skinned like me are horridly deficient)
    –vitamin A (only avail from MEAT, organs, not plant sources)
    –B vitamins (ditto, plant/grain sources are insufficient)

  33. pin_doctor says:

    I’m an acupuncturist and herbalist who treating many patients with multiple auto immune disorders with great results!!

    I whole heartedly believe that acupuncture, herbal medicine, and meditation can work concurrently with Western medicine to balance out the varied symptom presentations. Stimulating the immune system, decreasing inflammation, and providing relaxation are just a few of the benefits.

    I hope all of you suffering keep coming to this blog and getting a good laugh from all that CB brings! Truly the best medicine! :)

  34. coucou says:

    This is very weird, my Swedish grandmother’s maiden name was Sjogren…i had never heard of this disease…naturally i’m even more curious now…i feel very sorry for anyone who has to live with a chronic disease such as this…

  35. Trisha says:

    Venus,
    I, too, have Sjogren’s. I remember what a blessing the diagnosis came to me as well. Truly, things will get better – the medicine will kick in and like you said, just knowing what you are dealing with makes a world of difference. My journey began in 2004, and I wasn’t diagnosed until 2010! Follow instructions and take of yourself. I have a better diet now, I take plaquenil, visit a physical therapist for massage and the best treatment is acupuncture.
    God Bless, you.
    Trisha

  36. Nikki Marie says:

    I also have Sjogren’s and was very sad for Venus and her family when I heard that she had been diagnosed. Happy that she finally has an answer but bummed that it’s such a crappy one. I’ve been sick for over 30 years (I am 44) with various health problems (far too many to mention, but I will say that I’ve had 14 operations, had to have a hysterectomy in my 20′s and was in surgical menopause at 34….just to name a few things). I got very sick with pneumonia and the flu in the spring of 2006 and within months, I was suffering with the dry eyes, dry mouth, etc. The drs. suspect it was the high fever and virus associated with the flu/pneumonia illness that kind of kicked off the Sjogren’s. My dr. has tried immunosuppressants, chemo and IVIG (intravenous immunoglobulin). Not only have they not worked for me, but I am allergic and the last one almost killed me, literally. This syndrome has affected my eyes, mouth, tonsils (had to have them removed at the ripe old age of 38 because of this), lungs, thyroid, bladder, stomach, upper & lower GI. I have been hospitalized 5 times in the past 2 years and even spent 2 weeks at Mayo in Jacksonville. I hope that she has more success with the treatments than I have. Currently, we are simply treating those symptoms that we can and leaving well enough alone since I react so poorly to intervention. With all of this though, you can be happy and sick….you just have to work hard at it and surround yourself with good people and drs. It’s not easy, it’s a battle every single day but it can be done. And, on a side note…..I am ineligible for health insurance except through marriage so my husband had to get a policy for himself and his paralegal which is pricey because his firm is so small but mostly because I am sick. We pay $26,000/yr. for coverage for 2 people. I also have Medicare but if any of you have it, you know it doesn’t cover shit so that’s why I have to have additional coverage. Being sick sucks but you owe it to yourself to make the best of it. It’s the hardest thing ever but it can be done. Eat well, exercise, drink lots of water and listen to your body!

  37. Nikki Marie says:

    Another thing, for those of you with Sjogren’s who have trouble with dry mouth……….I use a prescription drug called Evoxac. I have no side effects with it and it absolutely works to help me with saliva. I also use Refresh Plus eye drops. They come in individual little tubes and do not have presevatives. I used to use drops that come in bottles but they have preservatives and it turned out that I was allergic and they were actually making my eyes worse. Since I use eye drops about 70 times a day, I certainly didn’t anything that would make my eyes any worse!

  38. Nikki Marie says:

    Also, we’ve tried tear duct plugs and other recommendations from my eye dr. and they have ALL made me worse. I take Gabapentin for the nerve damage but I haven’t gained any weight (I’ve been on it for 8 years). I am also very lucky with my teeth. I have never had a cavity (good dental genes!) and while my mouth is dry, I am able to continue with good oral care and only go to the dentist for twice a year cleanings.

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