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 t...

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.

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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