Restless Legs Syndrome (RLS) Discussion Board

I don't know how many of you know but the decision was made to change the name from Restless Legs Syndrome to Ekbom Disease earlier in the year. It was to take effect in July although it would be a long process to make the actual change.

Several people have taken a violent dislike to any name change and accuse the Foundation of conning them, lying to them, not paying attention to them..... Let me be clear on this if nothing else. The Foundation did not make that decision, they did not even vote on it at the meeting.

Almost immediately after that announcement it was discovered that there is an Ekbom Syndrome (a delusional disorder). I wish with all my heart that was known before we issued the announcement. However, we went back into meetings and it was decided to change the name again. It will be Willis-Ekbom Disease (also getting us away from the acronym ED).

There is once again a firestorm of objections and I can't say I don't understand. We look wishy-washy and uncertain. This is coming from me as a Board Member and as a fellow sufferer. There isn't anything anyone can do but I just wanted to get the information out. I still am sure that we needed a name change. I just wish it had panned out differently.

The main thing I wanted to get across is this, no matter what anyone on here thinks of the whole thing no one will get as testy as on facebook. Everyone has a right to their opinion and I would like to hear those. But at least I know that on here I won't be accused of things I didn't do. And keep in mind that the Foundation is not the bad guy here. That title must be shared between the IRLSSG, the medical advisory board and the board of directors.

I'm behind you, the Foundation, and the board 100%, Ruby. The goal is to make our lives better. Things don't always happen neatly and easily.

I'm happy you've identified the hiccup prior to implementation and resolved it successfully.

Oh, is the acronym WED?

Yep. It's much better than ED and easier to say than RLS. One more vent and I will quit, I promise! The same people who are fussing the most are not members of the Foundation. That makes no difference when you are giving your opinion but it does when you run down the Foundation. Supposedly the Foundation does nothing for them but make name changes. NOt nice of me but I wish I could just pull all the benefits they enjoy without being members for a month so they could see just what is being done for everyone, member or not. Also supposedly there are several cyber support groups with thousands of members who are opposed to the name change. I can't find the groups even by asking nicely of the "leader". Makes you wonder...OK, I'm through.

It's hard to do things for people who have no idea that you're responsible for the good things they enjoy! You can't do anything except continue to try to enlighten people, and enlist our help too. Unfortunately, you be sure no matter how hard you try, there will always be people who are unhappy. At least, knowing that, you can brush it off and not feel the stab personally.

The only issue I have with the name change is that what you have just said here, should have been in the last issue of Nightwalkers. Reading that last issue, you'd think the EkD name had never happened, which is a tad wierd because a lot of us were (jumping the gun) using it enthusiastically. I'm glad you've explained it.

Ultimately, Willis-Ekbom disease is a much better name than Ekbom and the time was right to quickly change minds, instead of going with a sub-par name just because it had already been announced. Yes, a bit of confusion. Ten years from now? No one will care about that, and everyone will be benefitting from the better name.

Just to add my 2 cents. I support the name change. And as for the mix up about Ekbom Disease vs. Willis-Ekbom Disease, no big deal. If I hadn't found this site, I wonder what would have happened to me. So I support the Foundation, the web site and everything connected. Nothing happens without some confusion. That is life, my friends.

BETTY/WV

Ruby,
You are fine. Trying to accomplish a mission takes a lot of effort, and people get all jacked up anytime somebody tries to offer a better way, and trying to organize and be persistent is something I SURE CANNOT DO!!! So, thank you for getting Willis-Ekbom Disease as our "new" name, the other one was indeed somewhat triffling, and in time all will be well.

Only thing I wonder is the dumb stuff: Will I still be able to log into our forum here?!? Haha. No, really, that's about my only "thing." It's sort of like changing an email name, people avoid it at all costs because of the loss of continuity. But not to worry, dear one, I'm sure that will work itself out, too, and I am not afraid, for our Ruby is on the job and she's been here I think before me, and I like your avatar.

So, phooey on the naysayers, you just keep on keeping on, and at least us here at this forum are nice folk. I wonder if it's part of the RLS gene that we are the "nice" people of our species? I think we need a new study!!! Smile.
Always, GG

I will defend the Foundation to my utmost.

In everything, there are those who 'do' and those who condemn, complain and criticise.

We are all with you Ruby.

What you talkin bout Willis?

But seriously there are always people whose sole purpose in life is to try to bring everyone else down to their level. They deserve nothing more than to be ignored.

Sorry, I thought I had posted a reply but it isn't on here! I just wanted to say that I truly appreciate the support and input.

Facebook and the discussion board are so totally different! I have seen lately a couple of people that say they have come to this board and there aren't any current posts, no activity... I don't know where they are looking! I wonder if some of it is just a way to keep people from coming here. Some people on facebook just seem to want to direct it all so maybe they feel threatened?

Anyway, thanks again.

Rubyslipper wrote:Sorry, I thought I had posted a reply but it isn't on here! I just wanted to say that I truly appreciate the support and input.

Facebook and the discussion board are so totally different! I have seen lately a couple of people that say they have come to this board and there aren't any current posts, no activity... I don't know where they are looking! I wonder if some of it is just a way to keep people from coming here. Some people on facebook just seem to want to direct it all so maybe they feel threatened?

Anyway, thanks again.

Ruby, I wonder if they are not logged in? They wouldn't see any activity because you only see the Registration and About This Site sections....

WoW! This is fantastic news! I've hated the name and the jokes that came with it for sooooo long! As a U.S. citizen, I hope that the disease will be taken more seriously by the Social Security Disability Administration, especially for those of us who's disease has become disabling. I was given disability based on RLS/PLMW, Fibromyalgia, and depression in 2007 after spending 4 years trying to convince them the disease, for me, was intractable and disabling.

Major props to those who worked to make this happen!

Anything is better than "Restless Leg Syndrome". Too many times I have heard people say "oh I have that" yet they live normal lives and do not need any medication.

I have had wiggly legs and jerky movements all my life without any needs for meds.

5 yrs ago is increased dramatically, unberable pain, went on medication (requip) and could not survive without it.


THANK YOU !!!

Thanks so much for the support. The furor has died down some except for just a few who don't like it. The biggest step is getting it recognized by the medical profession. Several people have said that their doctors will just refuse to use the new name. It makes you wonder if the same problem arose when they changed the name from consumption to tuberculosis or cramp colic to appendicitis. Did people threaten to never use mononeucleosis instead of gland fever? Anyway, we will see how it all shakes out. It won't happen overnight, that's for sure.

Hmmmm..... so many people say ' Oh I have that.
Maybe they do. But they have never felt the need to go to their doctor.

Like everything else there will be different levels of symptoms and it is more than likely that the posters on this site are those who have been driven to seek help and support.

I am happy there is a name change. And although my friends and family know it as rls, they also know how severe it can be.

When speaking with someone new I always refer to a neurological motor disorder. I am tired of getting looks that say rls is no big deal.