Where We Are

In 1683, Sir Thomas Willis wrote:

“Wherefore to some, when being a-bed

they betake themselves to sleep, presently

in the arms and legs, leapings and

contractions on the tendons, and so great

a restlessness and tossings of other members

ensue, that the diseased are no more able to

sleep, than if they were in a place of the

greatest torture.”

The Restless Legs Syndrome Foundation began in 1989 when eight people with restless legs syndrome (RLS) began sharing letters and discussing their “rare” condition. In 1992, the Foundation was incorporated as a nonprofit organization to address the growing need for research and information about this unknown condition. In the beginning, the Board of Directors would gather around the kitchen table of Executive Director Pickett Guthrie  to discuss their experiences with the disease and what courses of action would provide the most relief for persons with RLS. Their goals were simple and yet groundbreaking: increase awareness, improve treatments, and, through research, find a cure.

Today those goals have taken on a life of their own.  Our understanding of RLS has also grown. We now know that the condition is not rare at all. In fact, recent research suggests that up to 10 percent of the general population has this neurologic condition. It is perhaps the most common condition you have never heard of, affecting more people than even type 2 diabetes.

We now have medications specifically for helping with RLS symptoms and we know of many others that can be used.  We know that RLS can affect other body parts, not just the legs, and we know it can be accompanied by pain.  We know that children can have RLS at almost any age and that ADD and ADHD often go hand in hand with RLS.  We know it can be inherited (primary) or can be caused by other health problems (secondary).  We know so much more than we did in 1989 but there is so much more we have no answers for.

September is RLS Awareness Month.  For many, that isn't something they think much about.  We don't have cool commercials on television or slick advertising in magazines or newspapers.  Awareness is education--for people who suffer with this disorder, for those who have never heard of it and everyone in-between.  We know that RLS is ridiculed and passed off as either imaginary or not very serious.  Awareness can help with that.

Awareness will bring in researchers.  If they don't know how serious RLS is for us as sufferers, they won't care to do research.  Let's face it, researchers do what they do not only to find cures or better medications or just more information on a disorder; they do it to make a name for themselves.  Research takes money too.  Awareness can help bring in donations to attract these researchers.

Awareness is something we should all be working towards.  It doesn't need to take money to do.  Write a letter to the editor of your paper.  Become educated so you can talk to others.  Ask the Foundation for brochures to place in your doctor's office.  Support others on Facebook or the discussion board.  Or donate to the Foundation and specify where you want that donation to go.

I placed a challenge on Facebook.  Do something to promote awareness this month, something you would not normally do or have not done in the past.  I gave you some suggestions above.  If I have 10 people who promote RLS Awareness Week and can give me some proof, I will make a donation in your honor to the Foundation.  That's a win-win situation!

Be aware of Awareness Month.  Let's work together to take this all to a new level.

Moon and Stars,
Kathy