Results from a recent survey of 400 Sjogren's syndrome patients showed that half of those surveyed experienced common symptoms such as dry mouth or dry eyes for three or more years before receiving an accurate diagnosis from a healthcare professional. The survey also found that a lack of patient-physician dialogue about symptoms such as dry mouth contribute to delayed diagnosis.
"Sjogren's syndrome symptoms are often similar to other serious conditions such as lupus and rheumatoid arthritis, or can be mistaken for signs of the natural aging process, so healthcare professionals have a lot to consider when making a diagnosis," said Michael Brennan, DDS, MHS, Director of the Sjogren's Syndrome and Salivary Disorders Center at Carolinas Medical Center in Charlotte, N.C. "Additionally, diagnosing the condition is challenging because patients often try to cope with symptoms of the disease without talking with a doctor."
For instance, untreated or undiagnosed patients with dry mouth may combat this symptom by drinking more water. However, doing so can actually wash away existing saliva which contains beneficial components not found in water, and thereby make dry-mouth symptoms worse.
Sjogren's syndrome (pronounced SHOW-grens) is a chronic autoimmune disorder that affects approximately four million people in the U.S., with 90 percent of patients being women. Sjogren's syndrome causes the immune cells in the body to attack and destroy the moisture-producing glands, resulting in primary symptoms of dry mouth and dry eyes. Additional symptoms may include fatigue, joint pain, digestive problems and overall dryness, along with a number of other symptoms. While living for years with these dryness symptoms can be uncomfortable and, at times debilitating, patients can experience additional health complications if symptoms are left untreated.
"Saliva is critical for overall digestive and oral health, and if left untreated, dry-mouth symptoms can lead to severe tooth decay, gastroesophageal reflux disease (GERD) or oral yeast infections," says Dr. Brennan. "This risk, together with the complications associated with diagnosis, makes it imperative for people experiencing symptoms such as dry mouth to start an informed dialogue with their healthcare provider."
The survey, conducted in collaboration with the Sjogren's Syndrome Foundation (SSF), found that among those who dealt with complications that delayed their diagnosis, more than half of survey participants (55 percent) said they felt that their healthcare providers were dismissive of their symptoms. In fact, one in six people surveyed reported that they discussed their symptoms with five or more healthcare providers leading up to diagnosis.
When surveyed, nearly three out of four (73 percent) patients who experienced dry mouth associated with Sjogren's syndrome agreed few people understood their condition and two thirds (68 percent) also agreed that others didn't believe that their symptoms could have such a serious impact on day-to-day living.
"It took more than seven years and five doctor visits before I was finally diagnosed with Sjogren's syndrome," said Kathy McCarren from Alexandria, VA. "It's scary to imagine that even though my dry-mouth symptoms were painful and interfered with my ability to chew and swallow food, they could lead to even bigger health problems down the road. It wasn't until my rheumatologist and I discussed my dry-mouth symptoms in more detail that I was tested for Sjogren's syndrome. I'm now taking the necessary steps to manage my dry-mouth symptoms."
Similar to Kathy McCarren, the majority of Sjogren's syndrome patients surveyed (82 percent) did not realize that dry-mouth symptoms could lead to other serious medical conditions.
"By highlighting some of the factors identified in this survey that contribute to a delayed diagnosis and treatment, we hope to raise awareness of this condition and make it part of the standard patient-physician dialogue," said Steven Taylor, chief executive officer of the Sjogren's Syndrome Foundation (SSF) in Bethesda, MD. "Our goal is to motivate patients to discuss their symptoms as soon as they begin to experience them and encourage healthcare professionals to consider Sjogren's syndrome earlier in the diagnostic process so that patients can be diagnosed sooner and, if necessary, start the appropriate treatment."
Those experiencing dry-mouth and dry-eye symptoms should talk to their healthcare professional for more information on the symptoms, testing and diagnosis of Sjogren's syndrome and visit www.livingwithdryness.com.
Sjogren’s Syndrome Foundation