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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Venus Williams Stands up for Sjogren's Awareness!

 

On July 23rd, 2012 the Sjögren’s Syndrome Foundation joined with other Sjögren’s groups around the world to celebrate World Sjögren’s DayWorld Sjögren’s Day and got a BIG boost from Venus Williams, professional tennis player and Olympic Gold Medalist as well as fellow Sjogren’s patient

A year after helping to increase awareness for Sjogren’s when she publicly announced her diagnosis, Venus once again stood up for Sjögren’s awareness  when she carried the Olympic torch through the streets of London on, what more appropriate day, World Sjögren’s Day. (July 23rd)

Here is an excerpt from her Facebook page:

Venus“Today was an amazing day. I carried the Olympic flame right through Wimbledon! I truly felt the Olympic spirit, participation, giving your best and bringing people together no matter what their background of differences. This Olympics is very special to me having battled through an auto immune disease in the last year. It was my dream come true to qualify for the Olympics. To carry the torch today on World Sjögren’s day was so fitting. My run with the flame today represented triumph for everyone battling an auto immune disease. I'm planning on enjoying every day at the Olympics, I won't take even one for granted!”

As you know, World Sjögren’s Day commemorates the birthday of Henrik Sjögren, who first identified Sjögren’s in 1933. This past summer, we asked members and supporters to use World Sjögren’s Day as a reason to talk about Sjögren’s. Initially, sharing can be a scary thought but you will never know what support is out there if you don’t. Awareness can be reached one person at a time and we encourage everyone to find reasons in your own life to talk about Sjögren’s.

Venus went on to win the Women’s Doubles Olympic Tennis Gold Medal with her sister, Serena Williams. The Foundation wants to not only thank Venus for stepping up for Sjögren’s awareness but also for being inspiration to all Sjögren’s patients.

Comments

thanks and congrats to Venus Williams. But we need the other side of sjogren's understood. Those who are happy to be on computer as they are not physically strong enough to walk onto a tennis court. Much less practice or play tennis. This needs to addressed immediately
Posted @ Thursday, December 13, 2012 1:01 PM by Nancy Kelleher
The ones who need to become aware and learn more about the disease are doctors, eye doctors, primary care doctors and rheumatologists. It often takes years for a diagnosis and by then your teeth can be ruined, your eye sight can be affected and other majority organs can be affected and Sjogrens is usually the last thing that a patient is tested for.
Posted @ Thursday, December 13, 2012 2:34 PM by Beth
I hope Venus Williams continues to keep Sjogren's Syndrome and I hope she will be able to play tennis for years to come, even if she can play for the love of the game. 
I was able to travel to sunny islands, boating, and jetski. 
Now, I can't be in the sun nor outside in the heat and humidity. 
I do not sweat and have trouble breathing and most be concerned with overheating. Some people are fortunate to stay in the dry eyes and mouth mode, but it can go systemic at any time. I have Central Nervous System involvement but that happened after years of the dry eyes and mouth only. Those in that mode should enjoy their life as long as they can. 
Do today what you are able to do because you may not be able to in the future. A short trip to a department store is a big day for me now. Motto : Smile, stay positive, and laugh several times a day.
Posted @ Thursday, December 13, 2012 5:41 PM by Kathy
Correction to post by Kathy on Dec. 13th. 
 
I hope Venus Williams keeps Sjogren's in the news so that people will learn more about the disease.
Posted @ Thursday, December 13, 2012 5:55 PM by Kathy
I don't know how anyone with Sjogren's can play tennis given the strength and energy required. I really wonder if she has been misdiagnosed. I am also just blown away that few doctors know anything about it.
Posted @ Thursday, December 13, 2012 6:13 PM by Joy
Admiro de Venus Williams jogando tenis eu andar 10 passos,me tira o folego e me dói o pulmão,devido a pneumonite intersticial,como ela pode participar de uma partida se todo o organismo fica em desordem e enfrentar as dores que nos ameaçam,os olhos que se tornam rigidos ao movimento,a falta de ar,tudo que faz parte dessa Sindrome Devastadora.
Posted @ Thursday, December 13, 2012 6:37 PM by SONIA MARIA M ROSSI
I find that there are so many facets to Sjogren's and its related illnesses. For myself, I find my low energy level such a battle. From being a super workaholic to this draggy, pale, low-energy person has been and continues to be very hard to bear. I get so impatient and depressed with myself; also, if I can't understand, my doctors can't understand; then how can my loved ones???? I recently went to the City nearby to Christmas shop and was physically spent after an hour. I am still recuperating several days later suffering severe fatigue! I, also, suffer from any changes in atmospheric heat or cold. I must stay out of sunshine.
Posted @ Thursday, December 13, 2012 6:40 PM by Linda P
I feel for anyone who suffers with this very debilitating disease. I watch my 41 year old daughter feeling tired, in pain, fatigued & so many more horrible physical dilemmas. She was a teacher for 13 years with a lovely apartment in Manhattan & she had to give it all up to move back home with her dad & I. Keep the faith. God bless.
Posted @ Thursday, December 13, 2012 10:56 PM by KATHY G.
I really agree with Nancy on this one. Venus can afford (and totally deserves) the best care , possibly very expensive but effective biologicals (new treatment for auto immune diseases. If I can spend the day out of bed its a cause for celebration.
Posted @ Friday, December 14, 2012 12:36 AM by Shirley
I agree with Beth. The Medical Profession needs to be better educated regarding Sjogrens!
Posted @ Friday, December 14, 2012 12:03 PM by ML in VT
I wish there was a support group here where I live. These post are all sad but true. Doctors, Family, no one understands this horrible world we are trapped in !:( We are a ' Textbook ' treated disease. I feel like so much more progress could be made in helping us,if Doctors would just listen and believe what we tell them. ( There common response is, ' .. That is not a SS symptom ;/ ) SS has been steadily progressive for me. I remember years back before I even knew I had Sjogrens, feeling tired quite often, but still being able to push myself. But as several of you have already posted for many of us there comes a day, we no longer have that option. Little trips like just to the grocery store,can feel like a 10 mile hike when we are finished. The best advise given here was, if you are not yet this chronic YES enjoy every moment while it last !! @ Dear SSF you only seem to acknowledge those who are not yet so chronic .. please understand and hear our plea, we too would love to play tennis, swim , jog ... we too would love to continue on with the life we once knew .. but unless you hear, listen and believe what we are saying, we have no Hope of ever being that person again ! God Bless !
Posted @ Saturday, December 15, 2012 6:55 PM by SB
Yesterday out of the blue I had a "normal" day. My Sjogrens is debilitating and a good day is such a nice surprise. What yesterday made me realise is that "normal people" who do not suffer from this disease can have NO concept of the pain, neurological symptoms, dry eyes and mouth, and fatigue that we suffer from. (Not to mention Reynauds phenomena, peripheral neuropathy and proximal muscle weakness. all of which are my, and many of your, daily fare.) There are no words in the English language to describe what this feels like when you  
'look' normal to another person.By the way I live in South Sfrica, and it took 17 years to get diagnosed. Most GPs here have no idea about this disease especially if they test your RH factor and it is negative.Iam so graterful to have found SSF as there are no support groups in this country that Im aware of. I suspect with respect that Venus may have "Primary Sjogrens" in which the disease has not progressed much beyond the dry eye/mouth stage, as it would be impossible for many of us to contemplate even one game of tennis. My treatment options? Steroids, corisone or biologicals , which my specialist telle me would cost tens of thousands of rands per month. So... IF you have a GOOD DAY please just experience the joy but dont expect anyone who is not nrear and dear to you to have an inkling of what your "good" and "bad" days really mean. And know that you dont suffer alone, many thousands of people are going through the exact same thing. Thats why Blogs are so great. When I feel really alone with this I can 'dip' into the global Sjogrens community and feel silently supported and comforted. To SSF , I do agree that you tend to sometimes minimise the reality of this disease, and while we are all happy for Venus, I get people asking me if she can be okay to still play top level tennis, whats up with me that Im a couch potato most days? Not helpful.(Again with respect to Venus, no one is underestimating her courage and strength.)
Posted @ Saturday, December 15, 2012 11:13 PM by Shirley
Imagine if we lived in the days before Henk Sjogren defined Sjogrens Syndrome in 1933? Now theres a thought....At leasst we do HAVE the chance of being diagnosed and treated! Happy Holidays, Everyone!
Posted @ Sunday, December 16, 2012 8:37 AM by Shirley
I agree with all of the posts as there needs to be a lot more education as well as support groups out there for everyone. Thank goodness someone like Venus stepped up to the plate. The medical community definitely needs to get more involved.
Posted @ Friday, December 21, 2012 11:49 AM by Sally
I agree with those praising Venus for going to bat for people who are suffering. My Doctor is great and tests proved him right. I hope there can be some kind of cure in the near future. We all need to make people aware.
Posted @ Saturday, December 22, 2012 11:25 PM by jo
I just pray alot.
Posted @ Sunday, December 23, 2012 6:27 PM by
Dear Venus: initially, I wrote you 
a letter about contacting the  
sjogren's foundation as it is such a great resource of information and 
I was feeling for you in your "job"as to how Sjogren's can complicate your work, but just keep a positive attitude and lean on friends/family/supporters. then i read about you in the sjogrens newsletter so was happy to know you'd made contact. I don't have blog or tweeter so would be hard to contact me but at this time just hope you do well. Sincerely, c
Posted @ Friday, January 18, 2013 3:38 PM by Charlene T
Selfishly, I looked up more information about Venus, to see how she is doing. I feel that if she is not doing well, it may help my husband get disability. Maybe "the system of disability" would understand the frustration of this disease. His depression is getting worst because of having to wait & wait for a hearing.And then it is up to them to decide how bad he is. He was a workaholic & can do VERY little without getting all the symptons everyone has already talked about. Sorry Venus, for being so selfish, I do wish you well.
Posted @ Sunday, February 24, 2013 7:05 PM by Sue Lowery (Ken has Sjogrens)
I wish I could do 10% of what she does. I watch life from bed or couch with parotitis amongst many complications . Normal life ended at diagnosis. My friends and family could see this article and say " why cant you " .. and I begin the endless explanations I no longer what to give , over and over.
Posted @ Wednesday, March 06, 2013 11:31 AM by Cindy
I agree with all other posts. We need to talk about those of us who can not function like we used too. Every day is a struggle, and we look healthy. Drs, friends, and family members do not get it.
Posted @ Friday, March 22, 2013 5:20 PM by KATHY
I was diagnosed last year and had never heard of it before. The symptoms are getting progressively more acute but thankfully it is not as bad as many have described. I hope there is treatment but that will only come with more awareness. Thank you all for being there because at least i know I am not alone.
Posted @ Saturday, March 23, 2013 12:03 AM by Jo Allebach
Sue Lowery - Print out the SSDI listing of covered disorders. I believe it is now listed separately on it. Having at least an understanding and caring spouse or family member means the world to the person with SS. I am very bless to have that with my husband and a few friends. Looks like your husband will have you. 
 
I strongly believe that laughter helps a lot with your mood and pain. I love my Kindle and I download many humorous books and funny dog books I love dachshunds and always have one by my side. 
 
 
 
 
Posted @ Saturday, March 23, 2013 4:56 PM by Kathy
Im tired of mentioning that Venus has Sjogrens and having people say "well why aren't you up and about then?" It actually makes it harder not easier, with respect, to have such a very high-functioning ambassador. Maybe Venus just has eyes and mouth...most of us have the systemic version...very different story !
Posted @ Sunday, March 24, 2013 1:02 AM by Shirley
I was diagnosed with Sjogren's with R.A. also. I am very hopeful that someday, sometime, someone will find a cure. It has proven to be very expensive for my eye drops and medicine, and people just don't understand the fatigue and joint pain that go along with the disease. I also catch colds,etc. very easily. I hope and pray that someone will make a breakthrough!
Posted @ Tuesday, March 26, 2013 5:52 PM by Darcy VandeByl
First time posting and reading this is like inspire web site. I have sarcoidosis and sjogrens a double whammy. I know and here each how it feels that people and some doctors don't listen. Now I have decided I don't care anymore and keep myself educated to care for myself. I tell my doctors and they have respected my information. In return it is helping me. As far as friends/family I have given it! When they complain about their little cold etc, I just say think about feeling like 24/7! :) I don't let them take of my feeling anymore. I'm in bed all day, so what. My disease are getting worse I'm getting weaker and going on Iv therapy. Take one day at a time and enjoying that day :)
Posted @ Friday, March 29, 2013 6:22 PM by Diane Bradley
After 5 years of inexplicable symptoms, I was finally diagnosed with SS. Looking back, my poor mother probably had SS as well but went undiagnosed. She had to have her teeth pulled, etc.  
I'm doing all right, except for the chronic ulcer on my inner cheek which I am unable to heal. Yet it does inform me when I have eaten highly processed, coffee, chocolate, all sweets, or acidic foods. I try my best to steer away from gluten, including pasta, sugar, acidic fruits; and take eyebright and lutein for my eyes, along with warm wash cloths for relief. TV, reading, and computers exacerbate the dryness of the eyes. I am a yoga teacher so in this respect I am very lucky and have lots of energy. I feel that diet is very important in minimizing the symptoms. I have dropped 10 lbs since drastically cutting-out of my diet the aforementioned food items. I would like to follow Venus William's progress because of her holistic approach. I hope it works.
Posted @ Sunday, March 31, 2013 8:03 PM by Carmen Karady
I was recently diagnosised with Sjogrens. I don't have dry eyes or mouth. Some joint and nerve pain. I've changed my diet some and I'm reading more to see what other foods I need to add and eliminate. My energy level is good, it's actually increased. Reading a lot of the comments could cause some people to become very depressed. Life is what you make it. We have to accept & play with the hand we've been delt. Prayer, acceptance, and a positive attitude will help deal with life's challenges. My prayers are with everyone.
Posted @ Monday, April 15, 2013 10:34 PM by Anitra
I am 39 years old and I was diagnosed with Sjogrens last year. It came out of nowhere, I was working as an MT at a Drs office and started getting severe pain in my arms and wrists, I thought it was just from doing so many deep tissue massages in a row. I finally had to quit because it got worse and I was always calling in to work. Then the pain started moving to my knees and ankles, it got so bad I was bed ridden and had to crawl just to get around. Finally I decided to go to doctor and I was diagnosed right away. I am still in shock that I would have something like this but luckily the meds and regular exercise have allowed me to feel like my old self again. It took a little over a year to get to this point but I am fortunate not to have the dry eyes & mouth. I occasionally have some stiffness in my hands and I sleep ALOT but I am glad that it is not as bad as what some other people have to go through. When I was first diagnosed I came home and researched it only to find that Venus also had it, this gave me great hope since we are close in age and she is an athlete. I still look to her as inspiration for this disease, I will fight it as long as I am able too. It will NOT win!
Posted @ Friday, May 24, 2013 12:56 PM by Charlotte
I have SS and had it for years undiagnosed. In the past 3 years I have had 13 root canals,and more.  
I also have the arthritis and extreme fatigue. 
Now I'm losing my hair, and my stomach is so bad I can't eat anything. I agree that Venus may not be the best advocate, since she's out playing tennis, and I can't hardly get out of bed. I pray for anyone with this horrible disease.
Posted @ Friday, July 12, 2013 8:42 PM by J Touson
Since I wrote last in March, I have begun to manage my symptoms more efficiently, thus avoiding "flare-ups" to the uncontrollable magnitude they once were. The dry eyes, ulcerated gums and digestion problems are still there, but cutting-out as much processed, refined sugars and flour has helped a lot, the reason being is that my metabolism seems to have extremely accelerated, which then contributes to inflammation condition. My diet is practically gluten and sugar free. No spices for me. And I do take digestive enzymes to help alleviate some of my stomach disorders.  
Now I'm focusing on increasing my intake of greens and vegetables, intuitively knowing that my body requires more minerals.  
I continue teaching yoga, but have radically altered my style to a gentle, meditative stretching, rather than aerobic approach. I love to walk and swim and need to do more weight training to maintain my muscle strength. This coincides with consumption of more protein shakes. I feel that I have to become more social and not isolate myself. Everyone is confronted with aging--in different ways--and it's comforting to know we can ease each other into the next phase of life by offering support in the form of compassion and spirituality.
Posted @ Sunday, July 14, 2013 11:04 AM by Carmen Karady
J Touson 
I had the same problem. Just in case it may have been something else going on, I went to a dermatogist. 
Plaqunil can cause the follical oil glands to get plugged up and he prescribed Derma Smoothe and it worked. Applied twice a week for 5 hours. All my hair came back. 
Good luck. 
Kathy
Posted @ Sunday, July 14, 2013 1:31 PM by Kathy
I just watched a documentary on Venus and Serena that was produced in 2012. Venus is capable of competing because she has the financial position to have the best doctors, nutritionists, physical/occupational therapists, etc. at her disposal day and night. I am not saying that her activity level isn't remarkable; it is. However, it doesn't reflect the number of people behind the scenes that are making it happen. Don't beat yourselves up because Venus can continue to be physically active to the degree that she is. It is a carefully orchestrated illusion.
Posted @ Sunday, August 25, 2013 10:08 AM by Trish
I feel Venus is displaying Sjogrens Syndrome in an unrealistic light. She has the ability to play tennis when convenient for her she doesn't have to work a 9-5 job every day(40 HRS. PER WEEK) and struggle just to get through the day with the severe fatigue and joint pain.
Posted @ Sunday, July 20, 2014 12:07 PM by Eileen
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