Restless Legs Syndrome Foundation Blog

September 5, 2021

By Karla Dzienkowski, RLS Foundation Executive Director

RLS awareness and education are two recurring themes for individuals living with RLS. Unfortunately, healthcare providers often lack awareness of the disease and/or the clinical knowledge to manage patients according to consensus treatment guidelines.¹

Three women based in the UK, Ireland and the Netherlands joined forces to do something about it. Julie Gould, Charlotte Deerenberg and Rachel Andrews met online and decided to address the lack of RLS training offered during medical school.

In the UK, the undergraduate and postgraduate training curriculum for physicians does not include a study component dedicated to RLS that introduces the diagnostic criteria, treatment considerations and long-term management of the disease. In the US as well, medical students lack training in diagnosing neurological sleep disorders like RLS.

Lack of knowledge can have a negative impact on patients. Clinically significant RLS has an estimated prevalence of 2.7%, yet this common neurological sleep disorder is often misdiagnosed and undertreated.²

In 2017 an RLS Foundation-funded study published in Sleep Medicine found that training physicians in medical school to accurately diagnose RLS leads to lower overall healthcare costs and better health outcomes for patients.³

Deerenberg says, “Most individuals wait to see a physician until symptoms are more severe, affect daytime functioning and simple remedies (stretching, physical activity, massage) are no longer effective.”

A 2007 article in the Journal of Neural Transmission reported that it takes on average 12.7 years from the onset of symptoms for an RLS diagnosis to be made and treatment to begin – resulting in nearly 13 years of needless suffering.

When Gould, Deerenberg and Andrews recognized the absence of RLS in the curriculum to train physicians, they took a proactive approach to address this educational gap. Working together, they decided to raise awareness by creating a letter-writing campaign to educate key individuals (legislators, persons in the medical community, and leaders of organizations) about the disease. In August, 2021, The Lancet, a leading peer-reviewed medical journal, accepted and published their article, “A call for better training in restless legs syndrome.”

Andrews observes, “RLS evokes severe resistance in the medical community; individuals with RLS understand that resistance, and The Lancet overcame the resistance to RLS.”

September 23 is RLS Awareness Day. Gould says, “We seek more correspondence from The Lancet article and plan to continue our outreach to raise awareness of RLS and inclusion of restless legs syndrome in the medical school curriculum.”

Whether it is a group of concerned individuals meeting around a dining room table in Raleigh, North Carolina, to establish the RLS Foundation in 1992, or a small team collaborating online in 2021 to publish an article in The Lancet, one thing is clear to the RLS community: Our work is not yet done. Each of us needs to do our part.

What will you do to raise awareness and the need for medical education about RLS?

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¹Silber M, Buchfuhrer M, Earley CJ, Koo BB, Manconi M, Winkelman JW, for the Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation. The Management of Restless Legs Syndrome: An Updated Algorithm. Mayo Clin Proc.July2021;97(7):1921-1937. doi; 10.1016/j.mayocp.2020.12.026. Open Access Journal Article.

²Allen RP, Arthur S Walters AS, Montplaisir J, Hening W, Myers A, Bell TJ, Ferini-Strambi L. Restless legs syndrome prevalence and impact: REST general population study. Arch Intern Med. 2005 Jun 13;165(11):1286-92. doi: 10.1001/archinte.165.11.1286.

³Padula W, Phelps CE, Moran D, Earley CJ. Allocating provider resources to diagnose and treat restless legs syndrome: a cost-utility analysis. Sleep Med. 2017 Oct;38:44-49. doi: 10.1016/j.sleep.2017.06.034. Epub 2017 Jul 27.