4 Million Americans Suffer from this autoimmune disorder

Venus Williams may have been ranked number one in the world when it comes to professional tennis, but like four million other Americans, she also suffers from Sjögren’s (pronounced SHOW-grins) syndrome, an autoimmune disease.

Sjögren’s is named after Dr. Henrick Sjögren, the Swedish ophthalmologist who discovered the autoimmune disease in 1933. Sjögren’s is a chronic autoimmune inflammatory disease where white blood cells attack their moisture-producing glands.

Despite being one of the most prevalent autoimmune diseases, Sjögren’s is also one of the more misunderstood. That’s because Sjögren’s is often overlooked or misdiagnosed. Many of the symptoms associated with Sjögren’s can manifest and affect patients differently.

Sjögren’s can be identified by its two most common symptoms: dry eyes and a dry mouth. Two other primary symptoms of Sjögren’s include fatigue and joint pain. Sjögren’s syndrome often accompanies other immune disorders including rheumatoid arthritis and lupus.

In Sjögren’s syndrome, the white blood cells target their moisture-producing glands. The mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first. This results in decreased production of tears and saliva. The condition is much more common in women, affecting nine out of ten patients.

Sjögren’s syndrome can also affect other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.

Although you can develop Sjögren’s syndrome at any age, most people diagnosed with the chronic autoimmune disease are older than 40 at the time of their diagnosis. I say this as, on average, it takes almost five years from the time a patient seeks treatment for their symptoms to receive a formal diagnosis!

But the Sjögren’s Syndrome Foundation aims to change that. By furthering education and increasing public awareness, the foundation hopes that by 2017 they can shorten the time it takes to diagnose Sjögren’s.

There is no known cure for Sjögren’s syndrome. An early diagnosis and proper treatment are important for preventing more serious complications and improving a patient’s qualify of life.

Venus Williams and Her Struggle with Sjögren’s Syndrome

Once the world’s top ranked tennis player, Venus Williams’ career took a back seat, in part due to her struggle with Sjögren’s Syndrome. Since being diagnosed with Sjögren’s syndrome, Venus Williams has had to adjust her life in order to better manage the symptoms.

As a professional tennis player, that has meant a lot of adjustment. That’s because the fatigue associated with Sjögren’s syndrome feels more debilitating the older you get. For an athlete of Venus Williams’ caliber, who needs to be in top form, and whose body is in constant need of fluid to cool down, living with Sjögren’s syndrome can be very difficult.

In fact, her early struggled with Sjögren’s syndrome resulted in her dropping out of the U.S. Open Tennis Tournament in 2011. She still has to manage the symptoms of Sjögren’s Syndrome, but she certainly isn’t letting it hold her back.

Despite her struggles with Sjögren’s syndrome, Venus Williams continues to play tennis and is currently ranked seventh in the world. In 2015, she was the Women’s Tennis Association (WTA) Comeback Player of the Year. The former World Number 1, Williams won the 47thWTA title of her career in 2015—her biggest title in more than five years at the Premier 5-level Dongfeng Motor Wuhan Open.

Other Celebrities with Sjögren’s Syndrome

Venus Williams isn’t the only celebrity learnings to live with the daily symptoms of Sjögren’s Syndrome:

  • Nina Rawls: Nina Rawls, the widow of legendary singer Lou Rawls, was diagnosed with the same misunderstood chronic autoimmune disorder in 2011. Although Nina Rawls had no intention of revealing her diagnosis, she realized she needed to bring as much awareness to Sjögren’s Syndrome as possible. And was motivated to speak up after Venus Williams dropped out of the 2011 U.S. Open Tennis Tournament.

“I’m so happy that Venus has started to bring this disease to the forefront. I hope to do the same,” says Rawls. “I’m hoping a greater awareness of the syndrome will push others to be more pro-active in talking with their doctors and dentists about their symptoms and gain potential treatment options.”

  • Carrie Ann Inaba: Carrie Ann Inaba is proof your life doesn’t need to be put on hold because of Sjögren’s syndrome. She is a dancer, singer, choreographer, actress, game show host, and judge on Dancing with the Stars.

Inaba was recently diagnosed with Sjögren’s syndrome. But the symptoms were there long before that. For seven years she noticed she was getting tired and lethargic. And she didn’t want to work out as much. Eventually she went to a rheumatologist, who diagnosed her with Sjögren’s syndrome.

Since being diagnosed with Sjögren’s syndrome, Inaba has taken different approaches to dealing with the symptoms of Sjögren’s syndrome. This includes getting plenty of rest and eating an anti-inflammatory diet, along with keeping a reasonable work schedule. It also means combining traditional medicine with exercise and acupuncture.

Recent Studies on Sjögren’s Syndrome

As one of the most prevalent yet misunderstood chronic autoimmune diseases, there are an increasing number of research studies being conducted on Sjögren’s syndrome. This includes looking at genes and gene therapy, bacteria and viruses, the immune system, hormones, treating other skin problems, medicines that help the glands make moisture, and medicines to help the immune system and reduce swelling.

The Jerome L. Green Sjögren’s Syndrome Center at John Hopkin’s is working to cut down the time it takes to diagnose Sjögren’s syndrome. Researchers collected information about the clinical history and course of patients with suspected or established Sjögren’s syndrome. Participants complete questionnaires upon entry into the study and then at the time of return visit every six to 12 months.

The first objective is to develop standardized diagnostic criteria for Sjögren’s Syndrome. The second objective is to oversee the collection, processing and storage of clinical data and biospecimens (tears, saliva, and blood) from patients, their family members and controls.  The third objective is to develop a data and biospecimens bank from which these resources can be provided to qualified investigators with projects focused on Sjögren’s Syndrome.

The Garvan Institute of Medical Research in Sydney, Australia, is home to one of the largest immunology research programs in Australia. Researchers at Garvan have identified new triggers for some sub-forms of Sjögren’s.

Scientists at Garvan have shown that many patients suffering from Sjögren’s syndrome have high levels of ‘B cell-activating factor’ (BAFF) in their blood serum, as well as locally in their glands. BAFF plays a critical role in the response of antibody producing “B cells”.

Researchers have demonstrated that high levels of BAFF enable B cells to progress the disease without the help of T cells, which was previously thought to be essential for the development of Sjögren’s syndrome.

This is an important breakthrough that will allow researchers to develop a new generation of therapeutic agents for Sjögren’s syndrome.

Facts About Sjögren’s Syndrome

In the early 1900s, Dr. Henrick Sjögren, described seeing women with chronic arthritis symptoms who also had dry eyes and a dry mouth. Now known as Sjögren’s syndrome, the cause of the syndrome remains unknown.

It is, however, recognized as an autoimmune disease and genetic factors and possibly viral infections may increase the risk of developing Sjögren’s syndrome. Hormones may also be a leading factor.

Symptoms of Sjögren’s Syndrome

Symptoms of Sjögren’s syndrome may include:

  • Dry eyes which may also feel gritty or burning
  • Fatigue
  • Difficulty chewing, swallowing and talking
  • Cracked or sore tongue
  • Dry, burning throat
  • Difference in taste or smell
  • Dental decay
  • Oral yeast infections
  • Joint pain
  • Digestive difficulties
  • Dry nose and skin
  • Swelling of glands around face

Treatments for Sjögren’s Syndrome

Again, there is no known cure for Sjögren’s syndrome; instead, treatments are focused on relieving the symptoms:

  • Treating dry eyes: Dry eyes may be helped by using artificial tears or medication to stimulate the production of tears.
  • Treating dry mouth: For dry mouth, you can do something as simple as drink more water or chew gum. You can also use medication to stimulate saliva flow.
  • Treating dry skin: Moisturizers can be used for dry skin. And your healthcare practitioner can recommend anti-inflammatory drugs or immunosuppressants.

A Healthy Diet to Combat Sjögren’s Syndrome

In addition to seeking treatments for Sjögren’s syndrome it’s important to eat a healthy diet. To combat a disease like Sjögren’s syndrome, your body needs protein, carbohydrate, fats, vitamins, and minerals.

You will also want to avoid foods that exacerbate the symptoms associated with Sjögren’s syndrome. In general, foods that aggravate dry mouth should be avoided. That could include acidic foods and spices, dry foods like cereals and snack foods. The same goes for caffeinated rinks and alcohol.

This doesn’t mean you need to cut out all foods or drinks that aggravate you. After all, different foods affect people in different ways. Most importantly, be aware of what you eat and how it affects the symptoms of Sjögren’s syndrome and modify your diet accordingly.

Lifestyle Changes

You can’t cure Sjögren’s syndrome but with the proper treatment you can alleviate the symptoms and lead a normal life with only a few lifestyle changes. In some cases though, rare complications have been described. That’s why it’s important to seek regular medical care for general health screening and to follow up.

Thanks to ongoing research being done on Sjögren’s syndrome, researchers will ultimately allow us to manage Sjögren’s Syndrome and many other autoimmune diseases with more specific therapies.

*Article originally appeared on Doctors Health Press.