by Nikki Denton
Special to the NNPA from the New Pittsburgh Courier
Sjogrens is a rapidly growing disease that is not being diagnosed by many doctors. Venus Williams, one of many diagnosed with the disease is among the many women working to expose the general public to it. Locally Sandy Burkett is heading a campaign to educate the community.
More women than men are diagnosed with Sjogren’s, including tennis great Williams, who also suffered with symptoms of Sjögren’s for some time before being diagnosed. Once a diagnosis was defined, Williams said it was a “huge relief because I finally knew what was happening with my body.”
In an appearance on Katie Couric’s talk show in July, Williams explained that for some time she just didn’t feel well and she didn’t know why.
“I’d go to the doctor and I’d say, ‘I don’t feel good’ and they didn’t know why.” Williams, 33, who reported her diagnosis in 2011 illustrates what having the correct diagnosis means. She said this is her chance to understand why she wasn’t feeling best. She said with the knowledge of having Sjogrens, she must be conscious of what she’s doing. “Then I can feel better and then have a second chance, almost, to do better.”
Pittsburgh Sjogren’s Syndrome Support Group Leaders: Sandy Burkett and Pamela Ebaugh (Facebook Photo)
Locally Burkett knew something was wrong. She had been dealing with debilitating fatigue, dry, eyes and nasal passages for some time, and the conditions continued to worsen. But doctors couldn’t find any answers.
Burkett sought opinions from doctor after doctor, five to be exact, for five years before getting to the root of her problem. She was finally diagnosed with Sjogrens (pronounced Show-grins) Syndrome, an autoimmune condition in which the glands that produce moister to the body are attacked by the body. It is the second most prevalent autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. This connective tissue disease is in the same class as lupus, scleroderma, and rheumatoid arthritis.
As Sjögren’s is a systemic disease, its symptoms can manifest throughout the entire body causing additional problems such as vaginal dryness (painful intercourse), arthritis and muscle pain, difficulty swallowing, upset stomach and other gastrointestinal problems, tingling and numbness in the hands and feet.
In addition to the earlier mentioned symptoms, Burkett also suffered from swelling and pain in her feet, hands, and joints. She describes the fatigue as being so severe that it was all she could do to get out of bed in the morning. These symptoms were compounded with “brain fog,” trouble recalling information, processing information, and an inability to find the right words when speaking.
“It was like someone flipped a switch,” Burkett explains.
Susan Manzie, MD, Rheumatology, chair of Medicine at the Allegheny Health Network, says that normally the immune system defends against anything that doesn’t belong in body. “There are a large number of autoimmune diseases that occur for reasons that we don’t’ fully understand. Some can be attributed to combination of genetics and environmental triggers.”
Sjogren’s can present as the primary diagnosis or in combination with other autoimmune illnesses as a secondary diagnosis. The cluster of symptoms makes diagnosis difficult. Dr. Manzie says in many cases the biggest challenge is diagnosing. “Every patient can look different. It can be a spectrum of problems. Not everyone thinks about Sjogren’s when patients present with symptoms.”
Manzie says blood tests are done to look at immune markers. Eye exams determine dry eye and tear production, and a lip biopsy of inside of lip can be done to determine if there is inflammation of the salivary gland.
While there is no cure for Sjogren’s, there are plenty of good interventions available to help alleviate symptoms.
Dry mouth or general dryness in the body is not typically something that people report to their doctor,” says Dr. Manzie.
She advises that if something is going on that’s excessive for you. Tell your doctor. “If you wake up in the morning and your eyes are matted shut or your can’t wear your contacts because you have gritty feeling eyes, if you have having a lot of dental problems and your mouth is very dry or have swollen glands, if you are exhausted of have joint pain, tell your doctor.
For those already diagnosed with Sjogren’s, Dr. Manzie advises people to stay under the care of a doctor. Even though symptoms can be mild there are other complications can occur. It’s rare, but Dr. Manzie says some primary Sjogren’s patients have a higher risk of developing a lymphoma.
Since Sjogrens is so often misdiagnosed, yet so prevalent, Burkett organized a local support group that meets quarterly.
The next meeting is Saturday, Nov. 2, from 2 to 4 p.m. at Burkett’s family business, Vital Signs, 2812 Idlewood Road, in Carnegie.
For more information, call Burkett at 412-726-3159.
She also invites interested ones to visit Pittsburgh Sjogren’s Syndrome Support Group page on Facebook at http://www.facebook.com/PittsburghSjogrensSyndromeSupportGroup.
Burkett also writes a blog chronicling her journey with Sjogrens called Sjodry & Parched at http://sjodry.wordpress.com.
Additional information can also be found at the Sjogren’s World Organization website at http://www.jogrensworld.org.