Friday, March 15, 2013

Complementary Alternative Medicine Webinar Summary



Thank you to Norma G. Cuellar DSN, RN, FAAN for her presentation on Complementary Alternative Treatment. 

You can listen and view the recording by clicking here or to view the PowerPoint you can click here. (The recording of the Webinar is no longer available. Please contact us at info@willis-ekbom.org about viewing the webinar.)

Feel free to send any notes or comments to the Foundation at info@willis-ekbom.org. We will forward any notes to Dr. Cuellar.

Look for future articles on CAM in our quarterly newsletter Nightwalkers. You can become a member to receive future newsletters here.


Tuesday, March 12, 2013

Name Change Talking Points

The name change is part of an overall campaign to change the disease name from restless legs syndrome (first description of the disease in the medical literature by Swedish neurologist Dr. Karl Axel Ekbom in 1945) to Willis-Ekbom disease.

“Today is an exciting chapter in our organization’s history as we work to improve understanding of this common but under diagnosed disease”, says Foundation Executive Director Georgianna Bell.  “The ultimate purpose of changing the name of the disease, as well as the Foundation’s name, is to improve correct diagnosis and treatment individuals with the disease, because that is not happening right now”. 

REASONS TO CHANGE THE DISEASE NAME FROM RESTLESS LEGS SYNDROME (RLS) TO WILLIS-EKBOM DISEASE (WED):
  • To Drop Incorrect Descriptors.  Restless (legs are supposed to move); Legs (other body parts such as the arms and trunk are often involved); Syndrome (we now understand more about the pathophysiology—syndrome indicates only a collection of symptoms) 
  • Enhance Universal Recognition.  Translation into other languages is simplified
  • To Increase Disease Awareness.  The new name will provide an opportunity to further educate clinicians, research funders, and the public about the seriousness and scope of the disease.
  • To Move Away From Negative Connotations.  There are other examples such as changing senile dementia to Alzheimer disease (1977); Mongolism to Down syndrome (1965), and leprosy to Hansen’s disease
  • To Decrease Trivialization and Ridicule.  Many patient advocates and researchers view the existing name as inaccurate and often trivializing of the inherent suffering experienced by those with the disease.
REASONS TO CHANGE THE NAME OF THE ORGANIZATION FROM THE RESTLESS LEGS SYNDROME (RLS) FOUNDATION TO THE WILLIS-EKBOM DISEASE (WED) FOUNDATION:
  •       To Lead and Support the Name Change Process.  As the only organization representing the USA and Canadian patient population, we are in a unique position to provide leadership in the consistent use of Willis-Ekbom disease.
  •       To Provide Leadership in Securing Research Funds.  The Foundation will work closely with our collaborative partners at the National Institutes of Health to increase further understanding of the seriousness of the disease and its long-term consequences.
  •       To Model Positive Behavior.  It was Arc, the advocacy organization representing individuals with intellectual and developmental disabilities that changed their name from the Association for Retarded Citizens to just “Arc”.  The community actively rejected the label “retard” and took positive steps to eliminate it from our collective vocabulary.
  • .    To Increase Disease Awareness and Improve Treatments.  The new name will provide an opportunity to further our mission to educate clinicians, research funders, and the public about the seriousness and scope of the disease.

Saturday, March 2, 2013

Summary of Name Change Webinar

If you missed this informative Webinar on the name change, you can still listen and view the recording.

The recording of the Webinar is no longer available
Please contact us at info@willis-ekbom.org about viewing the webinar.


Topic: Changing the name from Restless Legs Syndrome to Willis-Ekbom disease: Learn more about the name change and its impact

Speakers: Dan Picchietti, MD of the Foundation's Medical Advisory Board; Georgianna Bell, Executive Director; and Richard Wilson, Support Group Leader

Date Held: Tuesday, February 26, 2013

Powerpoint Slides: RLS to WED Presentation

Powerpoint Slides: Foundation Name Change Presentation


The recording of the Webinar is no longer available. Please contact us at info@willis-ekbom.org about viewing the webinar.

Friday, March 1, 2013

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 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