Name change

rlsfirefly · Post by **rlsfirefly** » Fri Mar 04, 2011 5:12 pm

So what's happening with this? Just saw where they are changing the name to Ekbom Disease.

Post by **Polar Bear** » Fri Mar 04, 2011 5:53 pm

I thought that Ekbom Disease has always been an alternative name for rls.

Post by **ViewsAskew** » Fri Mar 04, 2011 6:07 pm

I haven't read the article myself, but as Polar Bear noted, Ekbom's name has always been an alternative (though not as well known). If I remember correctly, in the past it was a syndrome, though, not a disease.

By changing to disease, they are saying they know what causes it and it's not a collection of symptoms that have unknown origin. That's HUGE.

For what it's worth, Ekbom is the doctor who put RLS on the radar in the early 1900's. Too bad he was the only one interested at the time; we'd be 30-40 years farther along if anyone had read his research and continued to study it.

Rubyslipper · Post by **Rubyslipper** » Fri Mar 04, 2011 6:41 pm

The official name change will occur June 1 of this year. There will be a special page on the RLS website later to get more information about the transition to the new name.

I'm sorry to say that this does not mean we have found a cure or know for sure what causes Ekbom (see I'm trying to get used to it myself!) Disease. We do understand the pathophysiology of the disease though, which is a breakthrough. Before we called it a Syndrome simply because we didn't know what else to call it. "Syndrome" simply means a collection of symptoms. We are much further along with research now to justify staying a syndrome.

It is a big change--no doubt about that even if it has always been an alternative name. I think it will be a change for the better. Just be patient with the transition!

Post by **ViewsAskew** » Fri Mar 04, 2011 10:11 pm

After all these years of a dumb name, I think we can wait a few months, lol.

I remember asking someone about this several years ago. The response from the Foundation was that it was impossible to change.

Glad to see that no matter how impossible some things seem, they really are possible. Sort of like managing to have a life with RLS.

Rubyslipper · Post by **Rubyslipper** » Fri Mar 04, 2011 10:46 pm

I agree, sometimes the impossible becomes possible! I think that when we all talked about it before there just wasn't enough information or public awareness about RLS to back up a name change. If you didn't have it, you didn't care. If you did have it, you were just looking for relief. Maybe if we had then, we would be further along now. Hindsight is always so clear, isn't it?

But we have a great opportunity now to back up the Foundation and change the public view of EKD/RLS.

Post by **badnights** » Sat Mar 05, 2011 4:57 am

Please tell me where you saw this. Who are "they"?

Post by **ViewsAskew** » Sat Mar 05, 2011 5:41 am

Beth, Betty mentioned (in another post) that she'd read this in the latest Nightwalker's magasine.

Rubyslippers (who posted about it) is a board member of the RLS Foundation. The "they" is a reference to the Foundation.

Post by **badnights** » Sat Mar 05, 2011 6:28 pm

well it's really extraordinarily good news. Once the RLSF changes it, other organizations will be bound to follow suit, and eventually t'll make it's way into the International Classification of Diseases manuals.

Post by **ViewsAskew** » Sat Mar 05, 2011 8:23 pm

I agree that it's wonderful news. While the trivialization is important, more important, to me, is that this tells people it's a disease. While they've known that for awhile, the name has said otherwise.

Post by **badnights** » Tue Mar 08, 2011 8:01 am

I've been bragging about it already :wink:

Rubyslipper · Post by **Rubyslipper** » Wed Mar 09, 2011 5:22 pm

I appreciate the good comments about the name change. It was not an easy decision for the Board to make; we debated for a couple of years and in the past year have studied it carefully. Change is never easy and there will be some bumps along the way but I do believe this was the right thing to do.

However, I also realize that some people will be very upset with the name change. I just urge everyone to keep the larger picture in mind and not to focus on their opinion alone. There is definately some sharp criticism on facebook. I encourage everyone to express concerns and opinions but also to do so in a courteous manner.

Let's hope that this will be a good change that will help increase awareness and research for all of us who suffer with EKD.

Post by **Polar Bear** » Wed Mar 09, 2011 8:30 pm

The term Restless Legs has always (I have felt) trivialised our condition. The new name EKD/ Ekbom Disease does not lend itself so easily to frivolity.

No doubt it will take many years for the term Restless Legs to be a description rather than the name of the condition.

I can't see any difficulty with a name change.

Post by **ViewsAskew** » Wed Mar 09, 2011 8:43 pm

I don't participate in Facebook normally, but I'm a bit fascinated by an adverse reaction to the change. I can't think of anyone who's posted about the subject over the years that hasn't been FOR the change.

That said, everything is always personal, Ruby (it seems to me); all of our thoughts have feelings behind them and none of us play Dr Spock very well! As you noted, it's not odd that people would have difficulty with the change. I'm curious as to the reasons, though, to understand why people are upset, as I've not heard any here.

Rubyslipper · Post by **Rubyslipper** » Wed Mar 09, 2011 8:53 pm

That's what has surprised me so much...the attitude here vs. the attitude there. According to one person I have talked with today, she is in contact with hundreds of people each day and 90% of them were against the change. The survey that was sent out about the name change was about 60/40 maybe even a little more 55/45. But there weren't many that actually took the survey.

Some are very combatative and seem to think the board members and Foundation has it's own agenda. Hmmm....being on the board we pay our own expenses to the meetings, we work hard just like all the volunteers do, most of us suffer with RLS just like everyone else. Yep, I have my own agenda!

Constructive criticism is good. So is posting concerns and opinions. Especially on how to deal with this to the best of our abilities. I welcome suggestions and opinions and will do my best to recognize each.