Nightwalkers gets a new look
Wednesday, March 20, 2013
Wednesday, March 20, 2013
Complementary Alternative Medicine Webinar Summary
Friday, March 15, 2013Thank you to Norma G. Cuellar DSN, RN, FAAN for her presentation on Complementary Alternative Treatment. You can listen and vie...
Friday, March 15, 2013
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.
Name Change Talking Points
Tuesday, March 12, 2013The name change is part of an overall campaign to change the disease name from restless legs syndrome (first description of the disease in t...
Tuesday, March 12, 2013
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.
Summary of Name Change Webinar
Saturday, March 02, 2013If you missed this informative Webinar on the name change, you can still listen and view the recording. The recording of the Webinar is...
Saturday, March 02, 2013
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.
New Name. New Look. Same Mission.
Friday, March 01, 2013Restless Legs Syndrome Foundation is now the Willis-Ekbom Disease Foundation ROCHESTER, Minn., February 28, 2013 – The Restless Legs...
Friday, March 01, 2013
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.
###
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
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