Restless legs syndome is changing its name to Ekbom disease

[roster]

Wow! That must be one powerful disease to be able to change its own name.

MARCH 2011 -- Restless legs syndome is changing its name to Ekbom disease

WHY CHOOSE EKBOM DISEASE?
Ekbom disease has the advantage of dropping all incorrect descriptors:

· 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.

Ekbom disease is simple, serious, easy to remember, and honors a pioneer (Dr. Karl-Axel Ekbom) in the recognition of the disease. It is easily translatable into other languages.

WHEN WILL THE CHANGE OCCUR?
The RLS Foundation Board of Directors officially confirmed the name change on January 15, 2011. Staff is working on all the legal and procedural changes that must be in place before the new name goes into widespread use. We are launching a special page on our website that will give you all the latest information during this transition period. Our “official” change date is June 1, 2011.

HOW WILL MY DOCTOR KNOW ABOUT THE NEW NAME?
The Foundation’s Medical and Scientific Advisory Boards are assisting staff in identifying strategies to educate the medical and scientific communities about the new name. For some time in the future, the two names will be used together to reduce any confusion.

Ekbom disease, formerly known as restless legs syndrome, is a common neurological disorder characterized by an intense urge to move the legs, often accompanied by uncomfortable and unpleasant sensations. Sometimes the arms or other parts of the body are also affected.

https://www.rls.org/namechange

[BernieRay]

I am so happy to hear this. The misleading "RLS" has been causing me much restlessness. I'm looking forward to my symptoms easing up now that we have a good name for it.

[chunkyfrog]

Has anyone taken note of the fact that the initials are, "E.D.?"

[kteague]

Gonna be quite an education curve. The look on people's faces is gonna be priceless. I can see it now...

ME: I have Ekbom disease.
THEM: Ewwwwww, what's that?

They might be even more confused if I shorten it to ED.

Kathy

[syraphina]

i love how it has the same name as a type of dementia...great for our morale too!

[mars]

Hi All

Thanks for posting that Rooster.

Can anyone tell me what right the RLS Foundation has to change the name of Restless Leg Syndrome.

If it is no longer a syndrome, then Restless Leg Disorder would have been more acceptable. And to have it abbreviated to ED indicates how stupid their thinking about this has been.

Also, I do not understand the following quote -

WHY CHOOSE EKBOM DISEASE?
Ekbom disease has the advantage of dropping all incorrect descriptors:

· RESTLESS: legs are supposed to move, not remain at rest.

Why is the statement "legs are supposed to move, not remain at rest" supposed to be incorrect ?

The word restless is accurate. It does not mean constant movement, but movement in between resting. The resting can be long or short, the movement can be intermittent, or seemingly spontaneous.

Then it goes on to say -

· LEGS: other body parts such as the arms or trunk are often involved.

which is not true according to the link below, which says

"Occasionally, the arms are affected too."

http://www.patient.co.uk/health/Restles ... ndrome.htm

and what the hell does this mean -

SYNDROME: we now understand the pathophysiology of the disease. Syndrome indicates only a collection of symptoms.

and "pathophysiology" only means to study, or to observe - so this so-called reason is nonsense as well.

http://en.wikipedia.org/wiki/Pathophysiology

It has taken the medical profession a long time to accept that RLS deserves treatment, and now these people want to start all over again.

RLS is already called Ekboms Syndrome in some circles - see -

http://www.patient.co.uk/health/Restles ... ndrome.htm

So calling it Ekboms Disease is just asking for confusion.

It sounds to me like when a politician renames a bridge or a building, - egotistical arrogance - or as us mortals understand it - bullshit.

If Rooster had posted this around April 1st I would have taken the whole thing to be a joke, in fact, I am not convinced it isn't.

Mars

[BernieRay]

When I read it, my first thought was that is was an April Fool's joke.

[aka fuzzy96]

ekbom??? sounds so musoussy or full of phlem. please step away from me when you say that

agreed mars sounds like politics to me. maybe they could spend thier efforts finding treatment rather than fussin over a name. but then again i doubt any of them have the condition

[NightMonkey]

I believe the name was changed to honor Jimmy L. Ekbom.

[avi123]

Why is Ekbom (Restless legs) disease connected to OSA or to CPAP, if CPAP is not a treatment for it?

And why Sleep Studies deal with it?

See here:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/

[ozij]

I couldn't help noticing the Rooster's legs as I was reading this...

[Tahoe66]

Just wanted to make a couple of comments. Comments like I see hear represent a huge portion of how the RLS community is viewing this. someone asked why this is on a CPAP board. many, many people who have RLS, or EKD now, have sleep apnea, and in my suport groups we coer all sleep disorders. Sleep studies are useful for people with RLS, to see of they have the "cousin disorder" PLMD, or Periodic Leg Movement Disorder. This happens when we are sleeping, it is not like RLS, because we are unaware of the leg movemnets while we are sleeping. Our sleep partners are the ones that can notice it. So, a discussion of sleep disorders will involve RLS lots of times. I bet lots of people on this web site just do not have only sleep apnea, but may have other sleep disorders to deal with.
having been an RLS activist for over a decade, I am not pleased at all with this change, and do feel it is all political. One good thing that may come out of it, is new meds being introduced faster, becauee the FDA would take "Disease" much more seriously. I feel like this could have handled a lot differently, for sure.
And, the mix ups that will happen because of the difference of Ekbom's Syndrome (psychosis)vs Ekbom's Disease, a neurologiacl Disorder, will be endless, and set off the whole chain of RLS jokes that had died down in the media.
A foundation's main cause for existing is to raise money. That is why it is a Foundation. Also, they can NOT change the name themselves. They can only vote to recommend it. There are a lot of legal and medical things that ahve to be done, before other medical bodies accept this change. My opinion is that will be no issues from any of them, as it has already been decided. It was decided months ago. NOt to many of my people are happy at al!

[roster]

Just wanted to make a couple of comments. Comments like I see hear represent a huge portion of how the RLS community is viewing this. someone asked why this is on a CPAP board. many, many people who have RLS, or EKD now, have sleep apnea, and in my suport groups we coer all sleep disorders. Sleep studies are useful for people with RLS, to see of they have the "cousin disorder" PLMD, or Periodic Leg Movement Disorder. This happens when we are sleeping, it is not like RLS, because we are unaware of the leg movemnets while we are sleeping. Our sleep partners are the ones that can notice it. So, a discussion of sleep disorders will involve RLS lots of times. I bet lots of people on this web site just do not have only sleep apnea, but may have other sleep disorders to deal with.
having been an RLS activist for over a decade, I am not pleased at all with this change, and do feel it is all political. One good thing that may come out of it, is new meds being introduced faster, becauee the FDA would take "Disease" much more seriously. I feel like this could have handled a lot differently, for sure.
And, the mix ups that will happen because of the difference of Ekbom's Syndrome (psychosis)vs Ekbom's Disease, a neurologiacl Disorder, will be endless, and set off the whole chain of RLS jokes that had died down in the media.
A foundation's main cause for existing is to raise money. That is why it is a Foundation. Also, they can NOT change the name themselves. They can only vote to recommend it. There are a lot of legal and medical things that ahve to be done, before other medical bodies accept this change. My opinion is that will be no issues from any of them, as it has already been decided. It was decided months ago. NOt to many of my people are happy at al!

Thanks for commenting.

[roster]

I believe the name was changed to honor Jimmy L. Ekbom.

Good one!

[chunkyfrog]

Word games such as this can be either constructive and descriptive or limiting and destructive.
Let's sincerely hope some live-wire insurance people don't look at this as a way to save money.