Category: "Willis-Ekbom Disease"

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.

Restless Leg Syndrome Awareness Week

Link: http://www.sleepassociation.org/index.php?p=rlsawarenessweek

According to the American Sleep Association, this week February 1-7 is Restless Leg Syndrome Awareness week. Or, Willis-Ekbom Disease...which is the corrected name of the condition.

OTOH, according to the RLS Foundation...the awareness week is September 16-22?

Anyways....I've probably had Willis-Ekbom for years....I remember the weird something crawling under my skin sensations back into childhood, and I recall being told that I was a kicker in bed. I used to tuck the sheets in extra tight all around me, in an effort to control things....these days I don't do that anymore, but I need to have the weight of my comforter on top of me to sleep.

I also had a peculiar problem where the area around my feet would wear out faster on my sheets than anywhere else. One year, I put off checking for a long time, and eventually wore through the heated mattress pad underneath. That was a cold winter, with no working mattress pad.

Was annoying, because it is one of the few mattress pads out there that doesn't have the cord connection on the top surface of the pad...where my constant moving feet are going to keep bumping into it all night.

Then last year, I saw a new doctor, and before I said anything, he asked if I was on anything for my RLS. Now I'm on Ropinirole (Requip). I'm using a heated mattress pad that has the cord connection point on the surface, but it doesn't bother me as much and I things seem better. Though sometimes things still do shift. Also, the dose is mainly to treat the condition at night, I still have the sensations in the day time....