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Society for Women's Health Research Release: New National Survey Shows Restless Legs Syndrome (RLS) Is Largely Under-Recognized And Poorly Understood By U.S. Adults


11/10/2005 11:10:08 AM

ORLANDO, Fla., Nov. 10 /PRNewswire/ -- Today the Restless Legs Syndrome Foundation (RLSF) and the Society for Women's Health Research (SWHR) announced results from a new national survey of 1,000 U.S. adults that show about half (51 percent) are not familiar with Restless Legs Syndrome (RLS), a chronic and disruptive neurological condition characterized by an urge to move the legs. One year ago, a similar survey found that almost 64 percent of U.S. adults had not heard of RLS. While awareness of RLS is increasing, these groups feel that there is still much work to be done in educating the public about this condition and they are joining efforts to call attention to RLS and the need for greater education on this common, yet under-recognized condition. At this year's RLS Foundation National Patient Meeting, taking place November 9th - 13th in Orlando, Florida, the RLS Foundation will ask nearly 50 RLS support group leaders from around the country to sign a proclamation dedicating themselves to improving the lives of people with RLS through education and advocacy.

RLS, which encompasses a range of severity that includes mild, moderate and severe symptoms, affects approximately 10 percent of adults in the United States. In addition to a compelling urge to move the legs, RLS is characterized by uncomfortable or sometimes painful sensations in the legs often described as creeping-crawling, tingling, pulling or tightening. Symptoms of RLS generally occur at rest, such as when sitting, lying or sleeping, and are temporarily relieved by movement. These symptoms can significantly disrupt sleep and daily activities. People with RLS often have difficulty falling and staying asleep and can feel tired during the day.

"These survey results show that there is still a great need for educating the general public about RLS. People whose lives and families are disrupted by the symptoms of RLS need to be made aware that RLS is a recognized medical condition that can be managed," said Dr. Michael Thorpy, director of the Sleep-Wake Disorders Center at Montefiore Medical Center, Bronx, New York, and associate professor of neurology at Albert Einstein College of Medicine. "I urge people who have the symptoms of RLS to discuss them with their doctor."

Although the majority of adults surveyed did not recognize RLS by name, when given a description of the condition, 13 percent said that they suffered from the symptoms and 10 percent said they knew someone who did. These findings are consistent with more rigorous RLS epidemiological studies, which show that RLS symptoms, which encompass a range of severity that includes mild, moderate and severe symptoms, affect approximately 10 percent of the U.S. adult population. Only 15 percent of survey participants responded correctly that RLS affects this percentage of adults.

"RLS is sometimes described as 'the most common condition you've never heard of,'" said Georgi Bell, Executive Director, RLSF. "Increasing awareness of RLS is critical because so many patients suffer in silence, believing that their symptoms are unique to them. We are proud that our RLS Support Group Leaders are going to play an important role in the education process in their communities."

The survey also uncovered that many adults may not fully understand the impact RLS can have on daily activities. A quarter of respondents (25%) thought that RLS would have a negative impact on walking or running, when in fact, RLS symptoms are temporarily relieved by movement. In addition, only about half of survey respondents recognized that RLS has a negative impact on working at a desk everyday (55%), watching television or reading in the evening (53%) and sharing a bed with someone at night (58%).

"For years my RLS symptoms kept me up most of the night -- three or four times a week," said Pickett Guthrie, a decades-long RLS sufferer who helped found the Restless Legs Syndrome Foundation in an effort to help other patients like herself. "This chronic sleep disruption took a toll on many aspects of my daily activities. RLS also impacted my marriage. I didn't stop sharing a bed with my spouse due to these frequent sleep disturbances, but I know many people with RLS who did."

"We are so happy to join with the RLSF on this initiative given that RLS has a disproportionate effect on women," said SWHR Vice President of Communications, Jo Parrish, MA, MBA. "The Society wants to educate everyone -- especially women -- about RLS. Increased public awareness and improved understanding will help facilitate research and diagnosis."

About RLS

Although the exact cause of primary RLS is unknown, researchers hypothesize that the underlying cause of RLS may be related to dopamine, a chemical that carries the signals between nerve cells that control body movement. When the dopamine system does not function properly, it may upset the normal communication of these signals. In addition, a familial connection has been suggested for patients with primary RLS. Clinical data demonstrate a positive family history of the disorder in as many as 50 percent of affected individuals. When evaluating patients' symptoms of RLS, it is important for health care providers to rule out other underlying conditions that are associated with secondary RLS symptoms, such as iron deficiency, pregnancy and renal failure.

In general, many people with RLS report a significant impact on their daily activities. In addition to feeling tired during the day, people with RLS may also have difficulty with activities that require prolonged sitting such as movies, long car rides or airline flights. Women account for approximately two-thirds of people with RLS, although RLS occurs in both men and women. Further research is needed to understand why women may be affected disproportionately. Symptoms of RLS tend to become more troublesome as people get older, which is why most people aren't diagnosed until middle-age.

Despite the prevalence of RLS, it frequently remains under-diagnosed. A wide range of other diagnoses, including back pain, depression, arthritis, nocturnal cramps, insomnia and neuropathy have been given to patients who present with symptoms of RLS.

About the Survey

Russell Research(R) conducted the survey for the Society for Women's Health Research and Restless Legs Syndrome Foundation, with funding provided by GlaxoSmithKline, by telephone between Aug. 12-15, 2005, among a nationwide cross section of 1,153 U.S. males and females aged 18 and older. One thousand respondents completed the survey. Figures for age, sex, race, education, number of adults, number of voice/telephone lines in the household, region and size of place were weighted where necessary to align them with their actual proportions in the population. In theory, with a probability sample of this size, it is assumed that with 95 percent certainty, the results for the overall sample have a sampling error of plus or minus 2.9 percentage points.

About the Society for Women's Health Research

The Society for Women's Health Research is the nation's only non-profit organization whose mission is to improve the health of all women through research, education and advocacy. The Society encourages the study of sex differences between women and men that affect the prevention, diagnosis and treatment of disease. Visit us at http://www.womenshealthresearch.org.

About Restless Legs Syndrome Foundation

The Restless Legs Syndrome Foundation is a non-profit education and research organization. The Foundation is a 501 (c)(3) organization that is dedicated to improving the lives of individuals who live with this often disruptive disease. The organization's goals are to change the lives of RLS sufferers through education, advocacy and research. Visit us at http://www.rls.org.

Restless Legs Syndrome Foundation; Society for Women's Health Research

CONTACT: Patricia Li of Cohn & Wolfe, +1-212-798-9772,patricia_li@cohnwolfe.com; or Karen Young of Society for Women's HealthResearch, +1-202-496-5001, karen@womenshealthresearch.org; or Beth Osowskiof Restless Legs Syndrome Foundation, +1-507-421-8678, bell@rls.org



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