Should the name RLS be changed?

[stockton2malone2]

I am starting to think that the name Restless Legs Syndrome is a problem and needs to be changed. Below is very rough draft of an e-mail to the RLS Foundation that should sum up my thinking as to why. Whether you agree or disagree on the name, I would really like to hear your thoughts, suggestions, and ideas on this topic. Thank you!


Dear _________,
I am a longtime RLS patient, and myself and every other patient have a problem you and your organization could really help solve. Just about every person I've met with mild or above RLS has a story about dismissive doctors, not to mention friends and family and so on. Despite how debilitating it can be at times, our disease is often treated as a joke even by medical professionals. While there are likely several reasons behind this (it only being at night, hard to describe, etc) there is only one that makes all the others worse and is relatively solveable: the name. I'm sure in the 1940s Ekbom thought he was being helpful making the name so descriptive, but it just ends up making the condition and the suffering it causes sound ridiculous and made up. If diabetes was MEDICALLY called Frosting Shakes or Parkinson's was Wiggle Disorder I bet they would be taken a little less seriously too, no matter how undeserved that would be. So, I am asking you to please consider changing the name of the foundation to the Willis-Ekbom Disease Foundation, and help change the nomenclature at least among professionals. It may seem trivial and I know I'm just some guy, but if the name truly is a direct contributor to a lot of bad medical care isn't that something we should resolve? Thanks to your foundation I was able to eventually find a doctor who gets it, but many aren't so lucky, and I think this could help fix at least a little of that.

[stjohnh]

This is a known problem, and efforts have been made in the past to do this. I'm not sure, but I think at one time the RLS Foundation was indeed named Willis-Ekbom Disease Foundation. Pretty much everyone agress that Restless Legs Syndrome elicits an image of a fidgity toddler, who will "just grow out of it." The RLS name really doesn't convey the miserable lives many of us suffer due to poor treatment. The problem is that almost nobody knows what you are talking about if you say you have Willis-Ekbom Disease. I don't think too many here think the RLS name is a trivial matter.

[Rustsmith]

As Holland says, the Foundation was named the "Willis-Ekbom Foundation" for a few years up until about 2014 when they gave up and the board of directors reverted back to RLS. I even have a sweatshirt that they gave me when they were cleaning out the closet that says "WED Willis-Ekbom". Part of the problem is that even after all the international organizations agreed to switch to WED, many researchers were still using RLS for a variety of reasons that those outside of research circles would find confusion. I believe that many of the researchers who were in the know, were using WED/RLS, but there just weren't enough of them doing it for the new name to catch on. I still occasionally see a research article that mentions either RLS/WED or Willis-Ekbom, but those papers are very rare now.

Not only does RLS convey the wrong picture, there are also many doctors who think that because of the name that RLS cannot occur anywhere other than in the legs. The name is also no longer correct because there is enough known about the condition that it is no longer correctly described as a Syndrome but is now known to be due to a single cause, brain iron deficiency. This means that it is a Disease, not a Syndrome.

Finally, we (the moderators) tried for a while after the Foundation reverted to RLS to continue using RLS/WED here on the discussion board because we wholeheartedly agree with you. Unfortunately, the Foundation's insurance carrier and legal advisors insisted that all things Foundation had to use the same name, so we had to remove all of the WED references in our title and forum names.

[stockton2malone2]

Wow. I figured it'd be a very difficult task considering how hard it is to get even some neurologists just to read about augmentation, but clearly I was still naive. That is disappointing. Thank you both so much for the info though!

[ViewsAskew]

Wow. I figured it'd be a very difficult task considering how hard it is to get even some neurologists just to read about augmentation, but clearly I was still naive. That is disappointing. Thank you both so much for the info though!

It really is disappointing. I often still type RLS/WED anyway.

[badnights]

I always use WED/RLS. The disease has two names and each name is valid.

The Foundation did change its name in 2013, after the International RLS Study Group made a recommendation that the name of the disease be changed to Willis-Ekbom disease. In my estimation, the change would have taken a minimum of 5 years to be picked up if the Foundation was being effectively pushy but potentially up to 20 years if no assistance was provided.

The Foundation pushed for 2 years, then did an abrupt, surprising, and unjustified about-face, coincident with a change in the executive, and frankly, I am still traumatized by that. The good things the Foundation has done since then are many - they have raised awareness in the political and medical worlds, extablished the Quality Care Centers, set up the webinar series and physician education series, updated their publications, etc. .... but I cannot help but think how fantastic it would have been to have had that energy thrown into the name change too. Like Lou Gehrig's disease, people would be starting to be familiar with Willis-Ekbom disease by now.

However, the name Willis-Ekbom disease is still a valid name for the disease. It has been and is still being used in the literature, although most journals and authors choose the old name out of a desire to be instantly understood. Kudos to the ones who don't!

To have reverted to the old name because not enough people were using the new name is foolish - - they (or at least, the old executive) knew going into it that it would take many years for the change to catch on.

Unfortunately, the Foundation's insurance carrier and legal advisors insisted that all things Foundation had to use the same name, so we had to remove all of the WED references in our title and forum names.

Actually it was Foundation staff who anticipated what their legal advisors would say. They did not actually get legal advice on it. There is no legal reason to insist on referring to the disease as RLS instead of WED. The Foundation is the RLS Foundation and has to be referred to as such. But the disease is and always will be WED as well as RLS.

Go ahead with you letter; the Foundation needs to hear this more. I have had the same treatment from ignorant physicians and health clinic staff; as if my condition is trivial, made-up.

[ramoore]

Absolutely. The name "Restless Leg Syndrome" is ridiculous IMO and doesn't begin to describe the effects, suffering and quality of life that is often taken away from folks that deal with this. One could begin by changing the name of the "RLS Foundation".

[badnights]

I wish.