Wednesday, December 10, 2014

Stanford Sleep Medicine Center certified as WED/RLS Quality Care Center

FOR IMMEDIATE RELEASE

Rochester, Minn. – December 10, 2014 – The Willis-Ekbom Disease (WED) Foundation has certified the Stanford Center for Sleep Sciences and Medicine in Redwood City , California, as a WED/RLS Quality Care Center for patients with Willis-Ekbom disease (also known as restless legs syndrome, or WED/RLS).

Stanford is the fifth institution to join the Foundation’s program, which aims to improve quality of care for people with Willis-Ekbom disease. An estimated 2 to 3 percent of adults need clinical treatment for the disease, a chronic neurological disorder that can severely disrupt sleep and reduce quality of life.  

Juliane Winkelmann, MD, a member of the Stanford Department of Neurology & Neurological Sciences and the Center for Sleep Sciences and Medicine at Stanford says, “As the birthplace of sleep medicine, Stanford has driven considerable growth in sleep research and treatment. Our partnership with the WED Foundation will help improve the quality of life for individuals living with Willis-Ekbom disease by guaranteeing the highest standard of care.”

The WED Foundation has established a network of certified WED/RLS Quality Care Centers to improve diagnosis and treatment of the disease worldwide. Certified providers have a high level of expertise and experience treating WED/RLS patients. Patients and families benefit through:
  • Recognition of clinics as leaders in the field and as specialty centers for patients who are traveling or in search of knowledgeable healthcare providers
  • Availability of clinic staff as information resources for referring primary care providers
  • Patient educational offerings, print materials and connections with WED Foundation local support groups

Other clinics certified as WED/RLS Quality Care Centers include the Johns Hopkins Center for Restless Legs Syndrome in Baltimore, Md.; the Mayo Clinic Center for Sleep Medicine in Rochester, Minn.; the University of Texas Health Science Center at Houston; and the Innsbruck Medical University, Department of Neurology, Sleep Lab and Sleep Disorders Outpatient Clinic in Innsbruck, Austria.

“Access to a higher quality of care is vital,” says WED Foundation Executive Director Karla Dzienkowski. “Every day, the Foundation hears from individuals who are searching for experienced practitioners to help manage their disease. Effective treatment is essential, and our objective is to help healthcare providers meet this need. We are pleased to welcome such a distinguished group of physicians and researchers at Stanford to our Quality Care Center program. We look forward to collaborating with them in advancing the quality of care for WED/RLS patients.”

To learn more about the WED/RLS Quality Care Center Program, visit www.willis-ekbom.org/quality-care-program.

About the WED Foundation
The WED Foundation is dedicated to improving the lives of men, women and children who live with Willis-Ekbom disease (restless legs syndrome, or WED/RLS). Founded in 1989, the Foundation’s goals are to increase awareness, improve treatments, and through research, find a cure. The Foundation serves healthcare providers, researchers, over 5,000 members, and an estimated seven million individuals in the United States and Canada who have the disease. The WED Foundation Research Grant Program has awarded $1.4 million to fund medical research on WED/RLS causes and treatments. For more information, visit www.willis-ekbom.org.

Monday, September 15, 2014

FOR IMMEDIATE RELEASE: SHARE THE NEWS OF WILLIS-EKBOM DISEASE AWARENESS DAY 2014

FOR IMMEDIATE RELEASE:
SHARE THE NEWS OF WILLIS-EKBOM DISEASE AWARENESS DAY 2014

ROCHESTER, MINNESOTA - SEPTEMBER 15, 2014 - Willis-Ekbom Disease (WED) Awareness Day will be on Tuesday, September 23, 2014 to educate the public about Willis-Ekbom disease (also known as restless legs syndrome-RLS) – a common neurological disorder that affects the lives of millions. This day is an encouragement to continue to educate ourselves and work together as we take steps towards developing better treatments and a cure for WED/RLS.

“WED Awareness Day 2014 is an annual public awareness campaign to recognize the many accomplishments that have been made to increase awareness and education of the condition.  But, our work is not yet done.  The identification of new and better treatments is key to improving the quality of life for individuals living with WED/RLS.  In addition, new research leading to better treatment options will help people to lead full and productive lives,” noted Karla Dzienkowski, Executive Director of the Willis-Ekbom Disease Foundation.

Willis-Ekbom disease is a disruptive neurological disease characterized by an irresistible urge to move and by uncomfortable sensations in the legs or other limbs. The symptoms typically occur in the evening and worsen with rest. Thus, for many, WED/RLS severely disrupts sleep. Lack of awareness of this common disorder has caused many to suffer for years from misdiagnosis or a lack of diagnosis.

During WED Awareness Day and throughout the year, the nonprofit WED Foundation educates patients and healthcare providers and works to improve the future by funding research to find a cure. We have sought to improve the standard of care by developing a Quality Care Certification program that has recognized four centers in the United States and one in Europe.  Locally, support groups across the nation help increase awareness, hold educational meetings, and provide support to many people and families living with WED/RLS.  To learn more, visit the WED Foundation's website at www.willis-ekbom.org. 

Thursday, August 21, 2014

WED/RLS is different things to different people

Below are some common names used to describe WED/RLS symptoms.

Fidgety Legs
Jumpies
The Gotta Moves
Wiggles
Wheeby Geebees
Tortured Limbs
The Jitters
The Jerks
Night Thrashers
Heebee-Jeebees
Mom’s Leg Thing
The Fidgits
The Creepy Crawlies
Jumpy Legs
Jumpy Knees
Tickle Legs
The Crawlies
Edgy Legs
Bugs in the bones
Having butterflies in my legs
Jimmy Legs
Wiggle worms
The The Gotta Moves
Night Crawls
Day Crawls
Wretched limb syndrome
Anxious legs
Anxious feet
The twitches
The screechies
Eeky
Tingle legs
The Screechies
The Crinkles
Stretchy legs
Dead legs
Worm legs
Magic legs
Thing
That Icky twitchy leg
Jumpy life
Dancing legs
Crazy legs
Weak-knee-it is
Lead legs
The Scritchies
The leggy thing
Legs want to break dance
Twidgets
Racing legs
The kicks
Crazy Leg Thing
The Crawls
The jiggies
Atchie legs
The Shpilkes
The Stomps
The night time jitterbug
Happy Feet
Symphony feet
Ant legs
Jellow legs
The creepers
Legitis
The Willywumples
My hands and feet are nervous
Hot legs
Bugs crawling in my legs at night
Trains running up and down my legs
Tortured limbs

What other terms or phrases do you use to describe your WED/RLS symptoms?