New Name. New Look. Same Mission.

Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation ROCHESTER, Minn., February 28, 2013 – The Restless Legs...


Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation

ROCHESTER, Minn., February 28, 2013 – The Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation. The Rochester-based patient organization serves healthcare providers, researchers, and an estimated seven million people in the U.S. and Canada who have Willis-Ekbom disease (WED). The Foundation is changing its name to promote respect and ease of use of the name Willis-Ekbom disease in the medical and scientific communities and the public sphere.

Georgianna Bell, executive director, said, “This change aligns with a broader process underway worldwide to adopt the term Willis-Ekbom disease.  The ultimate purpose for changing the name is to improve the correct and timely diagnosis and treatment of the disease, because that is not happening right now.”

Reasons for the name change
The name Willis-Ekbom disease:
·         Eliminates incorrect descriptors—the condition  often involves parts of the body other than legs
·         Promotes cross-cultural ease of use
·         Responds to trivialization of the disease and humorous treatment in the media
·         Acknowledges the first known description by Sir Thomas Willis in 1672 and the first detailed clinical description by Dr. Karl Axel Ekbom in 1945.

About Willis-Ekbom disease
Willis-Ekbom disease is a chronic neurologic disorder that causes an irresistible urge to move the legs or other body parts, often accompanied by unusual or unpleasant sensations. These sensations tend to get worse when individuals are at rest—for example, when going to sleep at night or sitting for long periods of time. Because symptoms usually intensify in the evening, they can severely disrupt sleep and reduce quality of life.

An estimated 7­–10 percent of adults worldwide have the disease, which often runs in families. Although many people have a mild form, millions are seriously impacted. Several genes have been identified with an increased risk for developing the disease. Other factors under study include iron metabolism and neurotransmitter dysfunctions involving dopamine and glutamate.

There is currently no cure for WED. Mild symptoms can often be successfully managed with lifestyle changes, such as increased exercise and better sleep hygiene. In moderate and more severe cases, prescription medications can offer some relief of symptoms, and several drugs are FDA approved for treating the disease.
For more information, visit www.willis-ekbom.org.

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About the WED Foundation
The Foundation is dedicated to improving the lives of men, women and children who live with WED by increasing awareness, improving treatments and through research, finding a cure. The Foundation serves healthcare providers, researchers, over 4,000 members and an estimated seven million individuals in the U.S. and Canada who have the disease. The Foundation’s Research Grant Program has awarded over $1.4 million to medical research on causes and treatments. For more information, visit www.willis-ekbom.org.

CONTACT:
Georgianna Bell
Executive Director
Willis-Ekbom Disease Foundation
bell@willis-ekbom.org | 507-287-6465

The Restless Legs Syndrome Foundation is the leading organization for science-based education and patient services for people suffering from restless legs syndrome (RLS). It is also the only organization with a dedicated research grant program to advance promising research leading to new treatments and a cure. Our goals are simple: increase awareness of RLS, improve treatments, and, through research, find a cure.

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