Article Source: msnbc.com
from:msnbc.comWhy Sjogren's syndrome caused Venus Williams to quit U.S. open
Seeded on Thu Sep 1, 2011 12:26 PM EDT (msnbc.com)
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Bless her; and hope God's comfort be with her. And she can find curer and healer in our hospitals.
Autoimmune diseases such as Sjogren's (pronounced "SHOW-grens") commonly strike young adults (especially women) and I'm sorry that Venus has to limit her activities due to this painful and fatigue-inducing condition.
When I read the headline, I thought the article was going to say she had been diagnosed with lupus, another autoimmune disease that is seen more frequently in black women. Lupus and Sjogren's can go hand in hand, too.
Another top athlete, Olympic gold medal winning runner Sanya Richards-Ross, has had to limit her activities at times due to a rare autoimmune illness called Behcet's Disease. Despite excellent treatment and cutting-edge medications, Sanya still struggles at times to control the pain, fatigue, and disability caused by this disease.
Hopefully Sanya will be able to compete next year at the London Olympics, but these diseases have a mnd of their own and often can't be controlled fully with medications -- and there aren't any magic cures or diets/supplements that fix them.
These role-model women show that autoimmune diseases can strike healthy people without an identifiable cause or trigger and may affect them for a lifetime. Perhaps these ladies can contact each other and share their difficulties and tips about how Sjogren's and Behcet's have affected their lives.
Sjogrens does NOT usually affect young women. Over 90% are women and they are usually in their late 40s. The guys who get this (and have posted on here feel particularly alone). I seriously wouldn't wish this on anyone. I also ended up with leukemia and a host of other chronic, incurable, diseases. I wish the best for Venus, but the notion that you take a few drugs and somehow get better is just not true. In fact, you can't even sit out in the sun for even a few minutes. The most you can hope for is a day or two of peace once in awhile.
The fatigue is so overwhelming. Mainly living on a liquid, yogurt, cottage cheese and other soft foods gets old really fast - not to mention the weight loss. When you literally have to cut the crust off bread in order to try and eat a sandwich is beyond depressing. Nothing tastes good anyway.
PLEASE appreciate the small things in your life that the vast majority of people take for granted - eating pizza, going to the movies, being able to get a full night's sleep. It's so hard for even your family to understand. No one really likes to be around someone who is sick, so treasure your friends and family that stick with you.
Not to mention the affect on your spouse/partner, if you're lucky enough to have one. I literally could not get through most days without my husband's help. All the shopping, cleaning, cooking has now fallen on him as even the thought of using a vaccuum is out of the question.
Poor guy! I encourage him to get out as much as possible (even though he would rather go somewhere with me). Caretakers need help as well, maybe even more so. They feel so helpless and become frustrated that they can't "make it all better."
I wish people would at least to the minimum amount of research before they comment. Look it up in Wikipedia - or visit the Sjogren's Syndrome Foundation.
I wish all the best for Venus - what a terrible thing to have happen at such a young age. At any age.
Well that sucks! Hopefully taking some drugs will allow her to live a normal life even if she is not able to compete in tennis at the professional level. You can do it girl!
I was diagnosed with this at age 28, now 30yrs later my health is very bad, lost a lung,
underwent chemo, impaired vision, infections,too much to name, but this is a very
serious disorder which is not that well understood. I am so sorry for her, but maybe
this will now make it more known to people through her. It will eventually affect all
of her health and at this time it can't be well treated.
Sjogren's is one of those diseases you can't "see" with the naked eye as it affects the body internally and is devastating to the immune system. I'm a 36 year old male who's suffered from it for over 6 years now, although I still haven't been officially diagnosed.
It's difficult being the only guy I know suffering from it and not completely understanding it. Even my doctors find my symptoms too inconclusive to make an official diagnosis. My own research has helped me out a bit, but quite frankly I often feel very alone in my battle with it, perhaps because so little is understood about it and it only affects so many people.
I hope with all my heart and soul that a cure is found soon. I would give nearly anything to feel a normal person again, if that's even possible.
I was diagnosed with scleroderma (disease of the face/hand/feet) namely the disease of stone. your body becomes still along with that diagnosis came raynaud's syndrome/ sjogren syndrome and arthritis. This was in 2005.I researched my symptoms and told my doctor the name of the disease. I also find clinical trials in south carolina that was taking place. I drove to SC signed up for the clinical trials. Was placed on Imuran and Plaquenil for three years twice daily in large doses.In february i was taken off the large doses of Imuran and now take one tablet daily.....I changed my diet lost 60 lbs and started excercising more
I now take Zumba three days a week and feel fine.Unsure if this remission will last
but i do feel good
Be Blessed
I have Sjogren's syndrome, and the only reason I was diagnosed was because my rheumatologist, who I was seeing for an (at the time) unrelated condition, noted that I was drinking a lot of water during our appointment. I apologized and told her that I didn't mean to be rude, but my mouth gets so dry that I have trouble speaking if I don't drink frequently. She asked me if my eyes were dry, too, and I said yes. Half of Visine's profits come from me. She then asked me if I had problems with my teeth. Oh my lord, have I ever!! I'm obsessive with hygiene, and no amount of brushing and flossing kept me from getting tons of cavities.
My doctor told me to get a Schirmer test and a (surprisingly painful) lip biopsy. Lo and behold, another condition to add to my list. I don't really do much to manage it. My case must be pretty mild. I don't take any specific medications for it, I drink plenty of water, keep my eyes hydrated, and chew lots of sugar-free gum to keep my salivary glands working.
I wish Venus the best in coping with this illness!
My wife has had Sjogren's Syndrome for 5 years now and it is just a steady deterioration and when combined with Fibromyalgia makes for some rough days with not enough energy for her to even get out of bed. I feel for Venus and wish her the best.
Get Well Soon Venus!
I was diagnosed with this about 10-12 years ago. And most of the comments above are so true. It took awhile for the rheumatologist to diagnoise me, but he did and it has helped some. I also have COPD (on oxygen 24 hours a day), congestive heart failure, thyroid disease, fibromyalgia, chronic fatigue syndrome and many other things that go along with Sjogrens and my life sometimes is miserable. I take many pain pills which allow me to get out of bed and function but without them I could not even get up.
I am grateful to Venus for bringing the public attention to Sjogrens. Most people have never heard of it and when I say I have it they are shocked that it exists. Maybe Venus will get them working on a solution to our problems and help us all. Thanks Venus Williams
Having an autoimmune disorder myself, I feel for Venus and wish her the best. Often the fatigue is due to hormonal imbalances from the immune system attack. I could see how this can really be tough for an athlete.
Fortunately if she has the right doctors and gets on immuno-suppressants she should improve. Whether that is enough to get back to championship form is uncertain. But I wish her the best.
I just hope she doesn't fall into the clutches of overly stodgy, conservative doctors who cautiously avoid immuno-suppressants; I did that for a decade and it cost me a decade of my life. Now that she has the diagnosis she needs intelligent but aggressive doctors. The statement in the article that implies she could get by with eye drops and drinking water is a testament to the idiocy rampant in our medical system. And as personal experience has taught me it has very little to do with how much money you have to spend. Sometimes it takes luck to find the right doctor.
Good luck Venus!
For people with serious autoimmune diseases, taking immunosuppressive drugs can indeed help control their symptoms. However, they can also leave your body vulnerable to bacterial, viral, and fungal infections which can spiral out of control and even become fatal.
Included in this category of drugs are many of the drugs prescribed by rheumatologists such as biologics (Enbrel, Humira, Remicade etc.), chemo drugs, transplant meds, and steroids (prednisone).
If you're on these drugs and you start feeling increasingly ill, your doctor needs to have a strong suspicion of opportunistic infections, particularly systemic fungal infections which can be hard to diagnose and cure.
Being cautious about doling out immunosuppressives doesn't mean your doctor is overstodgy or conservative; he/she has valid concerns about their danger.
I recently found out that a long-time friend who has been suffering from various other medical diseases for quite awhile now has this disease. Her doctor says that they are all related to each other.
It is actually common for people who have one autoimmune disorder to develop others. And all autoimmune disorders seem to affect primarily women. They are the "invisible" diseases, people can't see you have them, and in many cases you can go a very long time trying to get a diagnosis.
As someone who suffers from a different autoimmune disorder, I wish Venus the best. I don't think any of the autoimmune diseases have cures, but with treatment and a lot of determination that the disease will not win, you can still have a good life.