10 Great Resources for Willis-Ekbom Disease/Restless Legs Syndrome

restless_leg_syndromeWe’ve assembled a list of our favorite Willis-Ekbom Disease (or Restless Legs Syndrome) resources, from books to support groups.

WEB

(1) Willis-Ekbom Disease Foundation
The Willis-Ekbom Disease Foundation website provides a wide array of resources for patients and providers, from basic diagnosis and treatment information to clinical trial listings.  A very helpful tool offered on this website is a printable symptom diary to help you and your doctor identify conditions and patterns affecting your WED/RLS.

(2) The Johns Hopkins Center for Restless Legs Syndrome
The WED/RLS center at the Johns Hopkins University School of Medicine keeps up-to-date information on its website about scientific findings, ongoing research questions, and research participation opportunities.

(3) Restless Legs Syndrome-United Kingdom
The RLS-UK website provides support for people living with WED/RLS all over the world, including detailed treatment information (with illustrations of therapeutic stretches and medication dosage guidelines), patient stories, discussion forum, and newsletters.  They also host a telephone helpline.

SOCIAL

Medication data shared among people with WED/RLS on PatientsLikeMe

Medication data shared on PatientsLikeMe

(4) Facebook Support Group
This Facebook group is a safe space in which people with WED/RLS and their loved ones can share stories, tips, and encouragement.  It is a closed group meaning only members can view the discussion threads.  Today, the group has over 2,600 members and many active conversations each day.

(5) PatientsLikeMe Community
On the PatientsLikeMe platform, nearly 2,000 people living with WED/RLS are sharing and discussing their medical data (diagnoses, symptoms, medications and therapies, perceived effectiveness, side effects, etc.) with other patients.

VIDEO

(6) Sharecare
On Sharecare you can watch a video series hosted by Dr. Mehmet Oz that explains WED/RLS and its causes, symptoms, complications, common co-existing conditions, and treatment options.

BOOKS

(7) Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic by Robert Yoakum
In this book from 2006 and already in its third printing, Bob Yoakum provides the patient perspective on the ways in which WED/RLS affects daily life and advice on how to cope.

(8) Restless Legs Syndrome: Coping with Your Sleepless Nights by Dr. Mark Buchfuhrer, Dr. Wayne Hening, & Dr. Clete Kushida 
This book from 2012 was sponsored by the American Academy of Neurology and is a comprehensive source of current WED/RLS knowledge.  It covers causes, symptoms, triggers, diagnosis, medications, therapies, age considerations, relationship issues, lifestyle impacts, and more.

LOCAL

(9) Meetings
The Willis-Ekbom Disease Foundation provides a list of support groups by state and country.

(10) Sleep Medicine Centers
This search tool lists the sleep centers in your area accredited by the American Academy of Sleep Medicine.

 

 

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