Restless Legs Syndrome Foundation Blog

Frequently Asked Questions About RLS Foundation Membership

At the RLS Foundation, we appreciate your support through membership. All RLS Foundation members can be proud of the part they play in making our mission a reality and reaching our goals to improve treatments and, through research, find a cure. If you have additional questions about membership, email info@rls.org or call (512) 366-9109.

New Membership

Q: What do I receive when I become an RLS Foundation member?

A: When you sign up for an RLS Foundation membership, you will receive a new member packet in the mail (or via email for international members) that includes the most recent edition of NightWalkers; up-to-date publications on the diagnosis, treatment and management of RLS; helpful handouts to carry with you, like the Medical Alert Card and Special Accommodations card for travel; and more! In addition to these benefits, you will gain unlimited access to resources through the online Member Portal, which contains all RLS Foundation publications, webinar recordings and an archive of all NightWalkers issues.

Q: Is there an annual membership fee?

A: The RLS Foundation receives the majority of its funding from membership and individual donations, plus a small portion from grants. RLS Foundation memberships have an annual fee of $35 in the US and $45 internationally. Over 77% of funds raised go directly toward RLS Foundation programs, including member/patient services, awareness outreach and educational resources developed by medical experts, and funding for the only research grant program dedicated to RLS.

Q: Is my membership fee tax deductible?

A: Yes. Because the RLS Foundation is a 501(c)(3) not-for-profit organization, all contributions – including membership fees and donations – are tax deductible up to the full extent permissible by law. Emails and letters from the Foundation acknowledging your donation serve as gift acknowledgments for tax purposes.

Q: How do I become a member?

A: Choose one of three easy ways: 1) Go to www.rls.org/become-a-member to provide your contact information and pay with a credit card; 2) Call us at (512) 366-9109 to provide all information by phone; or 3) Download a new member form at www.rls.org/joinform and mail the completed form along with a check payable in US funds to the RLS Foundation. Memberships take up to 24 business hours to process.

Q: Is financial assistance available?

A: Absolutely. In addition to offering discounted membership specials twice a year, scholarship memberships are available at no cost to those in need. If Foundation membership is outside of your budget, please email us at info@rls.org or call (512) 366- 9109 to request a free or discounted scholarship membership.

Membership Renewal

Q: When does my membership renew?

A: All annual memberships renew on September 30, according to our fiscal year. However, regardless of your join date, you will receive four issues of NightWalkers (equivalent to one year’s worth of membership) for the calendar year in which you join.

Q: How can I tell if my membership has expired?

A: There are several ways to check the status of your RLS Foundation membership: 1) View the back of your most recent copy of NightWalkers to locate the expiration date of your membership, printed above your name and address. 2) Go online to our website (www.rls.org), click “Member Login,” enter your username and password and click “Renew Your Membership Here.” You will be routed to a page that lists your membership details, including status. IMPORTANT NOTE: Membership status will only be listed if you are first logged into the website with your user name and password. 3) Give us a call at (512) 366-9109 or email us at info@rls.org. We’re happy to check your record in our system!

Q: How do I renew my membership?

A: Go online to our website at www.rls.org/renew, or click “Member Login,” enter your username and password, then click “Renew Your Membership Here.” You can also renew over the phone by calling (512) 366-9109 or by sending a US check payable to the RLS Foundation. Please be sure to specify “Membership” in the memo section of your check.

Q: I accidentally renewed my membership twice. Can you help?

A: A second transaction through the renewal page will be applied as an additional year of membership. If you prefer to apply this as a donation or to request a refund, please contact us right away at (512) 366-9109.

Member Portal

Q: I purchased a membership. Why can’t I open the online resources?

A: After purchasing an RLS Foundation membership, you must also create an online account to gain access to the Member Portal. Go to www.rls.org/login and click “New User Registration.” You will be asked to create a username and a password.

IMPORTANT NOTE: The password must be at least 12 characters, including at least one uppercase letter, one lowercase letter, one number and one special character, and should not include "RLS". Registration requests take up to 24 business hours to be linked to your membership record. We recommend completing this step immediately after purchasing your membership to expedite the process.

People who have moderate to severe restless legs syndrome, or RLS, are four times as likely to suffer from clinically severe depression and suicidal thoughts as the general population, according to a new study by the RLS Foundation. Despite patients’ symptom severity, primary care physicians frequently misdiagnose or mistreat the condition, the research also found.

The study, called ODYSSEY II, also notes people with moderate to severe RLS have less than half the health-related quality of life, or HRQoL, of a fully healthy person. This is comparable to the reduced quality of life from conditions such as psoriasis, chronic obstructive pulmonary disease (COPD), overactive bladder and inflammatory bowel disease.

“This study underscores the toll that RLS has on mental and physical health,” says Charles E. Phelps, PhD, a health economist and senior author of the study. “Depression and suicidal thoughts are major consequences of RLS, in addition to sleep loss. Sleep deprivation caused by RLS can rob people of the ability to live and work normally. Sleep loss also puts people at increased risk of developing hypertension, diabetes, heart attack, stroke and Alzheimer’s disease.”

RLS is a chronic neurological disease characterized by an irresistible urge to move the legs. Many people with RLS endure unrelenting nightly symptoms that severely disrupt sleep. An estimated 7%–8% of adults in the US have RLS, and 2%–3% need ongoing treatment. There are four FDA-approved drugs to treat RLS; however, these medications can lose their effectiveness over time or cause serious side effects in some patients.

In ODYSSEY II, 2,745 people with confirmed RLS completed a survey about RLS diagnosis and severity, associated medical conditions, treatments and medical care.

Among the respondents, 37% had depression that was moderate or worse — a rate four times that of the general US adult population. In addition, 15% had suicidal thoughts — four times the national average. By mapping depression scores to a standard measure for health-related quality of life, the researchers found that ODYSSEY II participants experienced less than half the quality of life of a fully healthy person.

The survey also found extensive delays in diagnosis and treatment. Overall, the average time from when people first began experiencing bothersome RLS symptoms to seeking treatment was 9.8 years, and from there the average time to diagnosis was 2.2 years.

Almost half of confirmed RLS patients (43%) reported that their primary care providers did not take their condition seriously. Those who received treatment at certified RLS Quality Care Centers rated their providers favorably 80% of the time, compared with only 52% of those using non-certified providers. Further, among patients taking opioid medication for RLS, 21% reported difficulty obtaining prescription renewals.

“These findings point to the urgent need for universal screening for RLS in primary care and for provider education,” says Phelps. “People are suffering needlessly with RLS for a decade or more before they receive treatment.”

Results also show limitations in RLS treatment options. Many respondents had stopped taking medications due to side effects or lack of relief. This emphasizes the need for further basic and clinical research to improve RLS treatment options, and find a cure.

A companion survey was completed by 432 people living with partners who had RLS. Results show RLS impacts partners in areas such as sleep, social lives, travel, mood and happiness. About one-third of partners had moved into separate beds, and almost 1 in 20 said that their partners’ RLS was disruptive enough to consider ending the relationship.

Karla Dzienkowski is executive director of the RLS Foundation. “ODYSSEY II highlights the challenges that people with RLS are facing every day,” Dzienkowski says. “We need to shorten the diagnostic timeline and improve RLS medical care. And we need research to find more enduring treatments for the millions of people who struggle with this devastating disease.”

For more details about the survey and key findings, view the executive summary at www.rls.org/ODYSSEYII.

ODYSSEY II was supported by an educational grant from Azurity Pharmaceuticals.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of the millions of men, women and children who live with restless legs syndrome, or RLS. Founded in 1989, the Foundation’s goals are to increase awareness, improve treatments and, through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, 6,300 members and an estimated 12 million individuals (10 million adults and 1.5 million children) in the US who have RLS. The RLS Foundation has awarded over $1.8 million in grants for medical research on RLS causes and treatments.

The Neurologist Prof. Dr. Mauro Manconi, Head of the Department of Sleep Medicine at the Neurocentre of Southern Switzerland of the Regional Hospital of Lugano, received the EFNA Award 2022 'Advocating for Gender Equity in Neurology' in the category "Outstanding Achievement by a Medical Professional" for his continuous and outstanding scientific work on the topic of RLS and pregnancy.

In addition to his thesis at the University of Ferrara (Italy), many of his scientific papers also deal with this topic. Time and again, he emphasised the need for an accurate diagnosis in order to recognise the syndrome and choose the optimal therapeutic strategy based on the patient's characteristics and individual needs.

As Mauro Manconi, among other things, has shown in his research the transient form of RLS in pregnancy is a significant risk factor for the development of a future chronic form of idiopathic RLS and for a new transient symptomatology in a future pregnancy. In addition, Manconi showed that women who had RLS onset before pregnancy and who had moderate or severe RLS symptoms were at increased risk for prenatal and postnatal depression. Depression, in turn, is associated with a significantly increased risk of suicide.

Manconi's achievements to benefit pregnant women and women affected by RLS included not only these insights, but also the development of appropriate guidelines for RLS, pregnancy and lactation, it has helped to ensure that concrete measures can be taken to provide rapid help and appropriate treatment to affected women and thus also to their newborns and families.

Prof. Mauro Manconi, who is also closely connected to the wider RLS patient community, has thus made an important contribution to the hitherto little-noticed problem area, has drawn attention to this highly underrecognized topic and raised awareness on the problems of pregnant women suffering from RLS thus making an important contribution to gender equality in the field of brain health.

Manconi was proposed by the European Alliance for Restless Legs Syndrome (EARLS), the federation of European RLS patient associations (www.earls.eu).

Manconi serves on the RLS Foundation’s Scientific and Medical Advisory Board and is Director at the Sleep Center, Neurocenter of Southern Switzerland, an RLS Foundation certified Quality Care Center.

BBC Reel Examines Restless Legs Syndrome

Restless legs syndrome (RLS) is a condition of the nervous system that, in its most serious form, can be highly debilitating. It is thought to affect roughly 10 percent of people worldwide, so how come it is still relatively unknown and poorly understood?

BBC Reel's Howard Timberlake goes in search of some facts and discovers that the condition, and some of the medication used to treat it, throws up more questions than it does answers.

Claudia Trenkwalder, MD, a former member of the RLS Foundation Medical Advisory Board, is featured discussing the genetics of RLS. Also mentioned is the Mayo Clinic Proceedings new guidelines making iron and alpha-2-delta ligands first-line treatment for RLS. The RLS Foundation has made these guidelines open access for free download here.

This short video points out the need for physician education about RLS. At the RLS Foundation we have developed an online physician education webinar series, and we have certified 12 RLS Quality Care Centers staffed by physicians with extensive experience in treating patients with severe RLS.

The Sleep Community Rallied

The RLS community responded quickly to a recent Action Alert to request our Representatives to sign on to a bipartisan letter in support of sleep disorders and sleep health disparities. On April 25, 2022, an amazing total of 36 U.S. Representatives signed that letter, which is very impressive by Congressional appropriations letter standards.

Meet the 36 Co-Signers

Please join us in thanking the bipartisan group of 36 Representatives who joined the letter including:

What If Your Representative Didn’t Sign On?

If your Representative did not sign on, it does NOT mean they didn’t support your request. All have the option to put in their requests using a confidential process rather than this public process. Also, if your Representative serves on the subcommittee that the letter is addressed to, they would not need to sign on. Securing these 36 co-signers could not have happened without all of the great efforts from this RLS community!

Thank You!

We extend a special thanks to Congressman Adam Schiff and his office for championing this letter once again this year. Thanks to all the Congressional Offices who responded to their constituents’ requests and signed on.

Thank you to all in the RLS community who reached out, shared their RLS story, and made their representative aware of the needs of their constituents: increased funding and more awareness for sleep disorders.

Iron Treatment Shows Promise in Children with RLS or PLMD

By Karla Dzienkowski, RN, BSN, Executive Director, RLS Foundation

Restless legs syndrome (RLS) and periodic limb movement disorder (PLMD) are two neurological conditions commonly treated with oral iron in children. Some children do not tolerate or respond sufficiently to oral iron, and there is not sufficient data to support the efficacy of intravenous (IV) iron in this patient group. This is an important issue, because RLS that is not well managed can have adverse effects on sleep quality and quantity, emotional health, daytime functioning, and quality of life.

RLS diagnostic criteria for children are:

• Urge to move
• Rest induced
• Gets better with movement
• Evening or nighttime worsening
• Sensations not caused by another behavioral or medical condition (may or may not be present)

An RLS diagnosis in children is based on the clinical assessment of reported symptoms and does not require documentation of periodic limb movements in sleep (PLMS); however, PLMS (more than 5/hour) do support a diagnosis of RLS and are present in 60% to 70% of children with RLS.

Researchers have hypothesized a relationship between low brain iron stores in both RLS and PLMD. Brain imaging studies have confirmed the presence of low brain iron levels in adults with RLS. In addition, symptom improvement following iron administration in children with RLS and PLMD is reported in medical publications.

An article in the November 2021 issue of Sleep Medicine titled “Clinical efficacy and safety of intravenous ferric carboxymaltose treatment of pediatric restless legs syndrome and periodic limb movement disorder” evaluates the single administration of IV iron in 39 children with a diagnosis of RLS or PLMD confirmed by two pediatric sleep specialists. The participants in the study included 29 children with RLS (14 boys, 15 girls) and 10 with PLMD (all boys), ages 2–17 years. Children in this cohort were selected using a retrospective chart review; they were referred for iron treatment from June 2019 to December 2020. All children selected to participate in the study had previously been prescribed oral iron but were categorized as “treatment failures” due to untoward side effects (e.g., constipation, vomiting, tooth discoloration) or failure to increase serum ferritin by at least 4 mcg/L after three months of taking an oral iron supplement, in conjunction with a lack of symptom improvement. It is important to note that none of the children in the study had another sleep disorder or a known problem absorbing nutrients from food (malabsorption syndrome).

Seattle Children’s Hospital was the only site selected for this study. The hospital has a dedicated iron infusion clinic for children supervised by a pediatric sleep specialist. The children were carefully monitored throughout the IV iron infusion process, including monitoring for the occurrence of any adverse reactions. All 39 children received a complete medical evaluation. A full iron panel (serum ferritin, serum iron, total iron-binding capacity, transferrin) and Clinical Global Impression (CGI) Scale score was obtained at baseline and eight weeks post-infusion with ferric carboxymaltose.

The study found:

• Pre-infusion CGI symptom severity for the group showed moderate illness. Post-infusion reports revealed “much improved” to “very much improved” CGI scores following one-time administration of IV ferric carboxymaltose.
• Mean ferritin levels for the group rose from 14.6 mcg/L to 112.4 mcg/L.
• Children with PLMD, compared to those with RLS, had similar improvements in symptoms and iron tests.
• Seven study participants experienced mild side effects to IV iron treatment.

In summary, in children with RLS and PLMD, iron is a common treatment consideration. For children who experience a poor response or adverse effects to oral iron therapy, IV iron is a promising new treatment alternative. Future research using randomized, controlled trials is needed to evaluate further the benefits of IV iron therapy in children.

Board Spotlight: Jeffrey Durmer, MD, PhD

By Clara Schlemeyer, Program Coordinator, RLS Foundation

I spoke with Dr. Jeffrey Durmer, a former member of the RLS Foundation’s Scientific and Medical Advisory Board and current member of the Foundation’s Board of Directors. He also serves on the Sleep Disorders Research Advisory Board (SDRAB) of the National Institutes of Health, and that just begins to list the important professional contributions he makes to the health and wellbeing of RLS patients. Dr. Durmer was awarded an RLS Foundation research grant for his work on pediatric RLS and is currently the chief medical officer at Nox Health, a leader in global sleep health solutions.

Q: How and why did you get involved with the RLS Foundation?

A: I was a pediatric and adult sleep researcher and physician, presenting a poster about my research at the 2003 American Academy of Sleep Medicine meeting. I had studied pediatric RLS and ambulatory leg monitoring, which was the first identification of kids with leg movements in multiple day studies. That’s when Karla Dzienkowski found me at my poster and peppered me with questions about RLS and kids, because she was trying to find solutions for her daughter. At that point she wasn’t even a member of the Board of the RLS Foundation; she was just a mom looking for answers. I introduced her to Dr. Dan Picchietti, a pediatric neurologist with experience treating RLS. Karla and I stayed in touch for many years after that, and she suggested that I get involved with the RLS Foundation as a member of the Scientific and Medical Advisory Board. I received an RLS Foundation grant for pediatric RLS research while I was at Emory University working on phenotyping and genotyping in Iceland and Atlanta. That experience really opened a lot of doors for me in terms of meeting new people in the RLS research world. It kindled in me a desire to be more involved with the RLS Foundation.

Q: How has your experience changed from being on the Scientific and Medical Advisory Board (SMAB) to serving on the Foundation’s Board of Directors?

A: The SMAB is focused on research and the direction of clinical care, and how to marry those two together to advance the Foundation’s mission. The Board of Directors takes a much broader view and considers how to maintain the health of the organization. The Board doesn’t focus solely on patient care. We look at the politics involved in access to patient care–for instance, the access to opioids for refractory cases of RLS. The financial and overall health of the organization is another big focus for the Board, as we try to align our mission with the changes that are currently happening in healthcare.

Q: What do you enjoy most about working with this Board?

A: I really love the comradery of a volunteer board. No one here is looking for anything but a good solid foundation on which to build the organization on behalf of the patients with RLS. Our Board members come from very diverse backgrounds, from someone like me who has done RLS research to people with previous careers in business and education. Some of us are retired and some are currently in the workforce. Some have RLS and others who don’t have RLS are nonetheless dedicated to finding a cure for RLS. This Board has a passion and compassion for people with RLS. That’s what the Board is all about, and I think that’s the best part of serving on this Board.

Q: Do you have any words of advice for those considering Board service?

A: Don’t be shy! It’s not only for people with advanced degrees or board experience. It’s about wanting to serve and having the bandwidth and the desire to effect change and wanting to spend time with people with that same mindset. All you have to do is open the door!

Q: What do you hope to see for the future of the RLS Foundation?

A: The one thing I’m really looking forward to is broadening the message of RLS to reach other patient populations that are suffering with RLS but have primary care physicians who don’t know how to treat it. I’m interested in taking a lead in getting the message out to those in the younger generation through the internet, social media, and even telemedicine.

Q: Your focus is on sleep. What should the RLS community know about sleep?

A: Well, the RLS community knows a lot about sleep deprivation. I think one of the most important things to know about sleep is that culturally, in our country, we are not taking sleep seriously as a fundamental requirement for our health. We have turned the corner on a few things related to the importance of diet and exercise, but that hasn’t happened for the subject of sleep. In fact, we are sleeping less and less as a culture and are reaping the outcome of poor sleep in terms of chronic disease, rising healthcare costs and workplace accidents. Sleep itself is a national security issue. We are in the midst of a cultural epidemic of poor sleep, and RLS is one reason for poor sleep. Good sleep hygiene consists of a routine and takes into consideration sleep duration, timing and quality. The RLS community needs to know this, and so does everyone else!