Health Watch: Venus Williams Diagnosed With Sjogren’s Syndrome, Local Women Raise Money & Awareness

PHILADELPHIA (CBS) — Tennis Star Venus Williams drops out of the U.S. Open and announced she’s battling a debilitating disease.

Venus has Sjogren’s Syndrome. It’s an autoimmune disease that strikes as many as one in 70 Americans, mostly women. Many cases go undiagnosed for years. But some local women are trying to change that and raise awareness.

Sipping water over and over again. It’s something most of these local women with the Philadelphia Chapter of the Sjogren’s Syndrome Foundation do, every day. They’re battling Sjogren’s syndrome, the same thing tennis star Venus Williams has.

Dry mouth and dry eyes are two of the most common symptoms.

“The first thing I want to do when I get up is put more drops in,” said Kristal Meagher, who suffers from Sjogren’s syndrome.

“You’re just extremely tired. You can sleep eight or nine hours and you wake so unrefreshed,” said Lisa Faricelli, who suffer from Sjogren’s syndrome.

That’s one of Venus’ problems. According to a statement, the condition affects her energy level and causes fatigue and joint pain.

“It’s very difficult. It changes your life,” said Lisa.

Sjogren’s often goes undiagnosed because it can affect a variety of organs, causing a wide range of symptoms including an increased risk for lymphoma.

There isn’t one single test that always confirms the disease.

“There’s no cure, and there’s no quick fix. And it usually is chronic for life, but there are some treatments, including some tablets that will help improve the flow of saliva and sometimes the flow of tears,” said Dr. Bevra Hahn, a Rheumatologist.

Now these women are fighting back. They’re hosting a Sips for Sjogren’s fundraising event and silent auction. The goal is to raise money and awareness about the condition, while serving waters from around the world.

“It’s something different because a lot of Sjogren’s patients can’t drink alcohol beverages because of the GERD and the upset stomachs, and so we drink a lot of water,” said Lisa.

“So excited we’re having the sip,” said Maggie Goddard, who suffers from Sjogren’s syndrome.

“I’m just looking forward to having so many people sharing the event and learning about Sjogren’s,” said Kristal.

The fundraiser is on September 18th in Mount Laurel, New Jersey. It costs 20 dollars per person.


Sjogren’s Syndrome Information –
Sjogren’s Syndrome Foundation –
Sips For Sjogren’s Event Information –
Penn Sjogren’s Syndrome Center –

Reported by Stephanie Stahl, CBS 3

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One Comment

  1. cloie43 says:

    I was not denigrating you but the fact that it was not reported that Sjogrens is under the umbrella of APS aka Autpphospholipid Syndrome. Check out Dr. Dorak Erkan at Hospital of Special Surgery. I am upset that neither she nor her sister who I would bet everything I own would test positive. By the time I was 32 I had had four pulmonary embolisms, continued to have DVT`s and constant pain for years. I have lupus,epilepsy among many other problems. They to this day have never been able to control clotting or INR time. Thia ia not pregnant woman`s disease,it affects MEN AND WOMEN.
    They shoudl be ashamed for not stepping forward and acknowledging they have this,it personifies “The You Don`t Look Sick” BS. Courtney Cox also refuses to admit it.

  2. Jennifer Robinson says:

    Thank you for covering this story and this condition. It is sad that it takes a celebrity to bring attention to a disease that has received little public awareness and has not received enough funding for research to find adequate treatment or a cure of any kind. I have been living with this illness since I was 19, and I am now 36. It has affected every aspect of my life. I have been poked, prodded, and tested for all the autoimmune diseases as well as many other conditions which it was determined I did not have, although I was also misdiagnosed with some. For years I was told I had Chronic Fatigue Syndrome and Fibromyalgia, even when my eyes were so dry they required punctal plugs to be put in. I am still wearing punctal plugs today, twelve years later, but now I know that I have Sjogren’s Syndrome, because I was finally correctly diagnosed. I also have the Fibromyalgia, thyroid conditions, and weight issues, which may be associated. I have arthritis of the cervical spine and other areas, peripheral neuropathy in my legs, and am now prediabetic. I don’t know if Sjogren’s caused all of these problems, but it caused most of them. I will be sick for the rest of my life if no cure is found.

    Sjogren’s also puts us at a much higher risk for lymphoma than that of a healthy person.

    Thank you to the women doing this Sips campaign to raise awareness. Your advocacy efforts are important and are appreciated by more than you will ever know.

  3. Kathleen Dlugosz says:

    Sad for Miss Williams, but am thankful for her courage to bring this condition to the forefront and give our condition a face people know. There are many times like Miss Williams, we can do things on some days and other days we just can’t; we start something and then quit; we commit to something and back-out. There are days we look normal, but healthwise, we are struggling with the fine line of what we want to do for or with others and what you feel your body needs, sometimes forgetting who else your decisions can affect. Symptom-wise personally, I always had dry mouth, even as a kid. But, I never had a cavity until after going to Temple, 21 years ago. I was very active as a kid through college, despite my weight. I now have a myriad number of symptoms and conditions, including several endochrine, arthritic, bowel, stomacj, neurologic, fibromyalgia (which is a neuroendochrine disorder) and dental issues. Many doctors were thinking it was weight related and fibromyalgia. Now I live in MN and Mayo Clinic last year correctly diagnosed me along with Lupus-like Syndrome and for a long time confirmed the diagnosis of FIbromyalgia. I didn’t even have the anti-bodies they usually test for Sjogren’s. 30% of those diagnosed don’t test positive for it. Many docs will see one diagnosis and not understand it well enough to explore other possible health issues. I am thankful my Rheumatologist did! Because it took so long to diagnose, it is believed mine has advanced. We tried three different oral meds which failed. I had to come off my steroidal asthma and eyes drops along with any steroidal injections for awhile to help maintain my immune system better and glad I did. In three weeks, I head down to Mayo with my sister for treatment for Sjogren’s with Rituxan IV therapy. Hopefully it will work. Once this is treated, and it works, the hope is I will be able to loose weight better again, fatigue and pain will lessen as well as inflammation and I can get my knees replaced and possible oral surgery. My goals are 1) to try to maintain and/or mend personal relationships I have/had with familly and friends who also have been effected socially through my ordeal. I am not perfect. I have had good days and recently, been very negative. For that I am sorry; and 2) form a network of support and eductation groups for Chronic Pain Conditions including fibromyalgia, arthritic, and automimune diseases. There just not enough in our country to support each other and many those who don’t have the condition find it difficult to deal with those who have these conditions. Miss Williams and everyone else suffering from this, I pray you get well, find the right doc and treatments and get the support you and your families and friends need. God Bless!

  4. Anne Jacobsen says:

    Thank you for covering this condition. It should also be noted that in rare cases babies born to women with Sjogrens may have congenital heart block ( Sjogrens is also commonly seen with other autoimmune conditions such as lupus and is not only annoying to live with, but chronic mouth dryness can lead to increased tooth and gum disease. Thankfully there are oral hydration products that can help to some degree. It often takes a celebrity to get attention to these types of diseases, but there are many of us living with them. I have lupus, Rheumatoid Arthritis, Sjogrens and Raynauds. We don’t look sick, but looks can be deceiving.

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