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The Willis-Ekbom Disease Foundation Announces RLS/WED Awareness Day -- Sept. 23, 2013

European Alliance for Restless Legs Syndrome Logo
Willis-Ekbom Disease Foundation Logo

ROCHESTER, Minn. and AMSTERDAM, Netherlands, Sept. 23, 2013 (GLOBE NEWSWIRE) -- Uncomfortable—even painful—sensations in the legs that cause an irresistible urge to get up, stretch and move around. This is a primary symptom of restless legs syndrome Willis-Ekbom disease, or RLS/WED), a chronic neurological disease affecting up to 7 percent of the world's population. For many, the disease severely disrupts sleep and in about 40-50 percent of RLS/WED patients, symptoms are so severe that they need medical treatment to function in their work and social lives.



On September 23, an international coalition of organizations representing patients, clinicians and scientists will celebrate RLS/WED Awareness Day to promote continuing education toward improving diagnosis and treatment.

Patients experience delayed diagnosis

Despite advances in science and education over the past two decades, people who have RLS/WED still face challenges to receiving quality medical care. In a 2012 survey of almost 4,200 patients in Canada, the United States and ten European countries, over two-thirds (68%) reported waiting three or more years from the time of their first symptoms to a correct diagnosis, with an average delay of 15.6 years.

"The study clearly shows that patients around the world have an important story to tell: the story of their struggle with the disease itself, and of their fight for getting a proper diagnosis and having to see so many different doctors until that happens. This is true around the globe, from the United States to Europe, to Japan, to Australia. The world urgently needs to become more aware of the suffering and the need for more research and proper care for these millions of patients," says Joke Jaarsma, president of EARLS.

Awareness Day activities:

  • Launch of a new website—www.whatisrls.org—to serve as a hub for activities sponsored by RLS/WED Awareness Day partners
  • Presentation of three abstracts at the 2013 World Association of Sleep Medicine (WASM) Congress in Valencia, Spain, with key findings from an international patient survey on diagnosis, sick leave and disability use, and medication dosing patterns
  • Staffing an information booth at the World Congress of Neurology in Vienna, Austria (September 21–26, 2013) and the WASM Congress in Valencia (September 28–October 2, 2013)
  • Publication of RLS/WED long-term treatment guidelines developed by the International RLS Study Group (IRLSSG) in Sleep Medicine Volume 14, Issue 7, Pages 675-684, July 2013.
  • Publication of the Willis-Ekbom Disease Foundation's revised treatment algorithm (developed by the Foundation's Medical Advisory Board) on practical management strategies for intermittent, chronic/persistent, and refractory WED/RLS in Mayo Clinic Proceedings September 2013;88(9):977-986.

"RLS/WED Awareness Day not only honors our accomplishments as a community of patients, clinicians and scientists, but also recognizes that we still have a long way to go. So many people living with the disease don't have access to the resources or information they need to manage their symptoms. There is also great need for further research and development of effective treatments to help people live productive lives," says Georgianna Bell, executive director of the Willis-Ekbom Disease (WED) Foundation in Rochester, Minn.

RLS/WED Awareness Day 2013 is co-chaired by the Willis-Ekbom Disease (WED) Foundation and the European Alliance for Restless Legs Syndrome (EARLS), which are joined by the European Restless Legs Syndrome Study Group (EURLSSG), the International Restless Legs Syndrome Study Group (IRLSSG), and the World Association of Sleep Medicine (WASM).

About restless legs syndrome (Willis-Ekbom disease, or RLS/WED)

RLS/WED affects people of all ages, genders and races. People who have the disease have to move their legs or arms to relieve uncomfortable, sometimes painful sensations. These sensations tend to get worse when the person is at rest, like when sitting or laying down, watching television or taking a long car ride. Because symptoms usually intensify in the evening, they often interfere severely with the ability to sleep. The sleep disruption associated with RLS/WED can wreak havoc on an individual's family, social and professional life. Emerging evidence also suggests the disease might be associated with increased cardiovascular and cerebrovascular risk.

While the causes of RLS/WED are not completely understood, several genes have been identified with an increased risk of WED/RLS. Other factors thought to contribute to the disease include iron metabolism and, possibly, abnormalities in the neurotransmitters dopamine and glutamate.

While there is not yet a cure for RLS/WED, treatment is available. Mild symptoms can often be managed by identifying triggers and employing lifestyle changes to reduce them. For moderate to severe WED/RLS, prescription medications can help alleviate symptoms. First-line therapies include:

  • Dopamine agonists, including pramipexole, ropinirole, and rotigotine
  • Dopamine precursors, such as levodopa
  • Alpha-2-delta ligands, such as gabapentin enacarbil, gabapentin, and pregabalin.

For a copy of the IRLSSG's "Summary of Recommendations for the Long-Term Treatment of RLS/WED," visit www.irlssg.org.

RLS/WED Awareness Day 2013 is generously supported by unrestricted grants from UCB Pharma Ltd.

CONTACT: Georgianna Bell Executive Director Willis-Ekbom Disease Foundation bell@willis-ekbom.org 507-287-6465 Joke Jaarsma President European Alliance for Restless Legs Syndrome www.earls.eu joke.jaarsma@chello.nl 31.20.6647471 / 31.6.13585896

Source:Willis-Ekbom Disease Foundation