Millions of Americans Could Have a Disease That is Overlooked or Misdiagnosed

April 5, 2010

BETHESDA, Md., April 5 /PRNewswire/ — 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.

The survey was sponsored by Daiichi Sankyo, Inc., in collaboration with the Sjogren’s Syndrome Foundation (SSF).

Survey Methodology

Ipsos Public Affairs conducted the online survey between September 3rd and 17th, 2009. The survey sample included a total of 400 interviews among women aged 40 and older residing in the U.S. who have been diagnosed with Sjogren’s syndrome. A national sample was sourced via Ipsos’ partner online panel, e-Rewards, and interviews were conducted on a fully-secured online hosting platform. A survey with an unweighted probability sample of this size and a 100 percent response rate would have an estimated margin of error of +/- 4.9 percentage points 19 times out of 20 of what the results would have been had the entire population of women aged 40 and older who have been diagnosed with Sjogren’s syndrome in the United States been polled. More comprehensive survey highlights can be found on www.livingwithdryness.com.

About the Sjogren’s Syndrome Foundation

Founded in 1983, the Sjogren’s Syndrome Foundation (SSF) provides patients with practical information and coping strategies that minimize the effects of Sjogren’s syndrome. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjogren’s syndrome. The Foundation’s mission is to educate patients and their families about Sjogren’s syndrome, to increase public and professional awareness of Sjogren’s syndrome, and encourage research into new treatments and a cure. For more information, please visit www.sjogrens.org.

About Daiichi Sankyo

Daiichi Sankyo, Inc., headquartered in Parsippany, New Jersey, is the U.S. subsidiary of Tokyo-based Daiichi Sankyo Co., Ltd., which is a global pharmaceutical innovator. The headquarters company was established in 2005 from the merger of two leading Japanese pharmaceutical companies. This integration created a more robust organization that allows for continuous development of novel drugs for patients around the world. A central focus of Daiichi Sankyo’s research and development is cardiovascular disease, including therapies for dyslipidemia, hypertension, diabetes and acute coronary syndrome. Also important to the company is the discovery of new medicines in the areas of infectious diseases, cancer, bone and joint diseases, and immune disorders. For more information, visit www.dsi.com.


    Steven Taylor
    Sjogren's Syndrome Foundation
    (301) 530-4420

    Marah Binder                  Jessica Morrison
    Daiichi Sankyo, Inc.          MS&L Worldwide
    (973) 944-2253                (212) 468-3724
    mabinder@dsi.com              jessica.morrison@mslworldwide.com
    ----------------              ---------------------------------

SOURCE Sjogren’s Syndrome Foundation

Source: newswire

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