Tags: foundation

The RLS Foundation is now the WED Foundation

Back in 2011, they renamed RLS (Restless Leg Syndrome) to WED (Willis-Ekbom Disease)...though early on during the name change process there were releases in the Internet incorrectly stating WED as Wittmaack-Ekbom Disease.

The reason to abandon RLS was that its 3 incorrect terms put together.

  • RESTLESS: legs are supposed to move, not remain at rest.
  • LEGS: other body parts such as the arms or trunk are often involved.
  • SYNDROME: we now understand the pathophysiology of the disease. Syndrome indicates only a collection of symptoms.

Though my earliest memories of RLS involved my legs, but it was my arms that bothered me more during the day time.... Though I didn't get a formal Dx (of RLS) until 2011.

The name was based on influential contributors to the history of RLS/WED....where the publications between Willis (1672) and Ekbom (1945), lacked the prominence of being first or most complete. Early on in the process Wittmaack (1861) circulated on the Internet (there was a 'press release' that was showing up on various message boards that I taken me...)...but Wittmaack incorrectly considered RLS a form of hysteria.

"Disease" was chosen over "syndrome" because of the many scientific advances, including current understanding of brain dopamine, brain iron, and genetics in this condition. However, for those uncomfortable with saying they have a disease, the revised name is distinctive enough that saying "Willis-Ekbom" will soon suffice.

Anyways, to complete the transition... On February 4, 2013, the Assured Name Change for the Restless Legs Syndrome Foundation was approved. They are now doing business as the Willis-Ekbom Disease Foundation. And, last night I received the last email from the RLS Foundation and rlsfoundation@rls.org. Future emails will be from the Willis-Ekbom Disease Foundation and info@willis-ekbom.org

The website is now: www.willis-ekbom.org (Effective February 28th, 2013) And, I see why they gave the link to the RLS-Foundation Facebook page, it opens as the Willis-Ekbom Disease Foundation page.