Restless Legs Syndrome Foundation Blog

Food is Now My Only Medicine

Restless legs syndrome has different manifestations as well as different triggers. Here is my story that can best be described by the Hippocrates quote: “Let food be thy medicine and medicine be thy food”.

Oakley Township, Macon County, Illinois

It is 1958, and my legs ache so relentlessly, so deeply that tears roll silently from the corners of my eyes. I am swaddled in quilts and blankets, writhing on the floor of our living room trying to get relief from the warmth of the fireplace. My feet touch the Motorola that brings Ed Sullivan into our home every Sunday night. My pillow touches Mama’s feet as she sleeps in the Barcalounger, having no other idea how to comfort me other than sitting vigil. The doctor says “It’s just growing pains”.

It is 1958, and Dad is keeping a cow so that we will have fresh milk, because who among us has heard of a sensitivity to dairy, the only questions being how much cream to separate and whether or not to pasteurize.

It is 1958, and Mama is still baking bread and cookies, because who among us has heard of a sensitivity to gluten?

It is 1958, and my tongue breaks out when I eat tomatoes, but that’s what we grow, so I eat tomatoes. Also from our garden, I eat peas and eggplant, both of which will score high on the food sensitivity tests I take sixty years later.

It is 1958, and although I will not know the name of the disease until I am middle-aged, I will suffer from restless legs syndrome for the next six decades. Over the years I will have dozens of prescriptions, both FDA-approved and orphan drugs, most with significant side effects. The worst include spectacular sleepwalking incidents with cooking sessions and outdoor nocturnal strolls; I will fall asleep while driving.

Jet Blue Flight: JFK-LAX

It is 2013, a month before my 65th birthday, and I am counting in slow motion till takeoff; I fight the panic that can spiral. Thoughtlessly, I had packed my restless legs syndrome drugs, so now they are in the belly of the plane instead of my belly, and I have a death grip on the armrests of 23C in a narrow-body thermos bound for Los Angeles. At the moment, my RLS symptoms themselves are not severe, but my PTSD is. I’m fighting neuro-transmitter flashbacks to the myriad times I’ve had to struggle to sit still. If I move as I want to, as I need to, as my body demands, I will become a caricature of mental illness. I am consumed with the struggle not to fidget. I can think of nothing other than when I can next move, stand, or stretch.

Those night crawlers I used to catch in the rain as a kid? They are now inside my thighs. Their mouths clamp on to my kneecaps before squirming throughout the fascia, wriggling amongst tendons and muscles, slithering amidst vessels and arteries. I breathe deeply, sit up straight, and close my eyes. I put my hands on my thighs and feel the movement, trying to gauge how severe this bout will be so that I can prepare for whatever magnitude on the Richter Scale is coming. I sing along with Carole King: “I feel my thighs, move, under my hands, I feel the sky tumbling down, a-tumbling down.”

My recurring nightmare is that I’ll become one of the stories whispered in RLS support circles: I’ll be the person that becomes so obsessed with the need to move, that I’ll end up on a 72-hour psych hold.

When the seatbelt sign is turned off and I can move about the plane, I will confide in the flight attendant, so she knows she doesn’t have to wonder about me.

Claremont, California

Finally, in 2019, at the age of 71, I am diagnosed with food allergies. If I completely avoid gluten, dairy, eggs; if I eschew caffeine and alcohol; if I only eat organic foods free of pesticides, preservatives, hormones and additives; if I avoid a lengthy list of foods from avocados to zucchini, my RLS will disappear completely. Completely.

I start eating a plant-forward, anti-inflammatory diet in my attempt to cure RLS, the disease I have struggled with since the age of ten, and adjunct health miracles happen: I inadvertently cure five additional chronic conditions for which I have taken medications for years. These days, at age 74, without medication, I no longer have high blood pressure, high cholesterol, reflux (GERD), or clinical depression, and my arthritis is under control.

There are no dietary restrictions that are as bad as living with RLS. I have made peace with sleep and awaken rested for the first time in my life.

Janice Hoffmann served on the RLS Foundation Board of Directors from 2005 through 2011, and was Chair from 2008 through 2010. She is a member of the Ekbom Heritage Society and has been a strong advocate and friend of the RLS Foundation for most of our 30 years.hAfter leaving the working farm of her childhood, Janice had two careers and traveled to over 60 countries. Now she spends her Southern California days walking her dog, writing, and reflecting on things done and left undone.

Dear Honorable Chairs and Ranking Members:

On behalf of the 63 member organizations of the National Heart, Lung, and Blood Institute (NHLBI) Constituency Group, we support your efforts to finalize a Fiscal Year (FY) 2023 omnibus funding bill and include a robust investment in the National Institutes of Health, including at least $3.946 billion for the NHLBI. A timely FY 2023 appropriation is vital to allow the NHLBI to continue addressing COVID-19 while maintaining progress on mission critical research addressing cardiovascular, respiratory, blood, and sleep related research priorities.

As you know, delays in regular annual appropriations funding make it challenging to launch major initiatives and pursue critical scientific opportunities to prevent and develop new treatments for heart, lung, blood, and sleep diseases and conditions. This tends to impede our rapidly evolving understanding of cardiovascular disease, including heart failure and congenital heart disease, novel therapies under development for lung diseases such as chronic obstructive pulmonary disease (COPD), asthma, and improved treatment of blood disorders such as sickle cell disease and hemophilia.

The best approach to sustaining incremental progress in research and discoveries is effective planning made possible by recurring, timely, and continuous appropriations. This certainty is critical to scientific advancement. Without regular annual appropriations funding, vital basic, clinical, and translational research opportunities to address critical needs related to the long-term impact of COVID-19 across heart, lung, blood, and sleep, including protection of our most vulnerable populations, are compromised, delayed, or potentially curtailed.

Without sustained annual appropriations, NHLBI will not be able to maintain the momentum associated with its spotlight on the disparate effect that COVID-19 and post-acute COVID-19 has had on vulnerable communities, to continue with research efforts aimed at identifying the causes of and contributors to health disparities, and develop more effective approaches to effectively address, reduce, and ultimately eliminate them. The pandemic also has underscored the need for significant investments in understanding, diagnosing, and treating lung disease as well as preserving lung health.

Given that cardiovascular disease is the leading cause of pregnancy-related deaths, NHLBI has also taken a lead role in working with others at NIH to support research to reduce the nation’s alarming rates of maternal mortality and morbidity, especially among women of color. Without sustained and timely annual funding, NHLBI’s programs focused on improving women’s health throughout the lifespan, including initiatives concentrated on maternal health disparities, will not keep pace with this epidemic.

New sleep research that focuses on risk prevention strategies associated with sleep loss such as hypertension, diabetes, cardiovascular disease, and obesity is needed, especially in populations with relevant health disparities. The alarming growth of these comorbid factors since the onset of COVID-19 impact health related quality of life leading to further impacts on mental health, specifically depression, and suicidal ideation.

An FY 2023 appropriation of $3.946 billion for the NHLBI would allow the Institute to enhance current programs and pursue promising basic, translational, clinical, and prevention research to better diagnose, treat, and prevent these diseases.

Please contact Valerie Adelson with the American Thoracic Society at vadelson@thoracic.org or John Laughner with the American Heart Association at John.Laughner@heart.org if you have questions or need additional information. Thank you for your consideration.

Sincerely,

Valerie Adelson
Co-chair
NHLBI Constituency Group

John Laughner
Co-chair
NHLBI Constituency Group

The 2022 CDC Opioid Prescribing Guidelines released on November 3, 2022, replace earlier guidelines that had led to confusion, misinterpretation, and faulty application by medical providers. Like the 2016 guidelines, the new guidelines focus on acute, subacute, and chronic pain.

Unfortunately, the new Guidelines fail to recognize that restless legs syndrome (RLS), a serious disease affecting millions of Americans, can only be relieved by daily small doses of opioids in many cases. This omission is surprising in light of the fact that the guidelines call out three medical conditions (sickle cell disease, cancer, or end-of-life care) that may require sustained doses of opioids. RLS, like these three conditions, should have an exemption from this Guideline.

RLS Foundation Board Member and Chair-Elect, Dr. Shalini Paruthi says, “RLS symptoms can occur anywhere along the spectrum from an urge to move the limbs to a painful sensation. RLS can be a chronic disorder for many people. Furthermore, patients with RLS face significant impacts on physical health, mental health, access to care and barriers to treatment. These health disparities disproportionately affect individuals with refractory RLS who require daily medical treatment. The RLS ODYSSEY II study found a four-fold risk for depression and suicidal ideation in patients with RLS, signifying the heavy burden of disease in this population.”

We are disappointed to learn that RLS was not included in the exemption of medical conditions, given the scientific validation of population prevalenceⁱ, strong genetic basisⁱⁱ and impacts on health-related quality of lifeⁱⁱⁱ.

RLS Foundation Scientific and Medical Advisory Board Chair, Dr. Christopher J. Earley says, “These guidelines have the potential to affect the 1 in 33 Americans with severe RLS who require daily medical treatment. Patients with moderate to severe RLS live every day with awareness of the burden of this disease; forever conscious of the limitations and barriers to appropriate and effective treatment.” Many RLS patients have experienced the negative consequences of the prior CDC Opioid Prescribing Guidelines as they find physicians and pharmacists unwilling to prescribe or supply the only medications that bring them relief. Without explicit mention of RLS in the new guidelines, they fear that federal and state agencies will use the revised guidelines to continue to deny them treatment.

The new guidelines are an improvement from those they replace, recognizing that no “one-size fits all approach” is appropriate and that provider clinical judgment is fundamental to making decisions on the use of opioids to manage pain.

The RLS Foundation and its Science and Medical Advisory Board will sharpen and clarify the recommendations to minimize their impact on long-term prescriptions of opioids to treat refractory RLS. In the interim, we urge members to report any problems they face in maintaining a relationship with their healthcare provider and/or obtaining prescription access to opioid therapy to manage refractory RLS. We ask that you provide your contact information and permission to use your experience to explain to policymakers the barriers facing the RLS community.

The RLS Foundation thanks the nearly 500 individuals that responded to the call to action during the public comment period on the proposed draft of the 2022 CDC Opioid Prescribing Guidelines. We are disappointed by the CDC’s lack of an exemption for RLS and plan to accelerate our advocacy efforts on Capitol Hill to ensure patients with refractory RLS have appropriate treatment access to opioid therapy. The RLS Foundation will continue to provide updates on our outreach activities and opportunities for you to voice your concerns with public officials in Washington, DC and at the CDC.

_________

The Honorable Patty Murray, Chair
The Honorable Roy Blunt, Ranking Member
The Honorable Rosa DeLauro, Chair
The Honorable Tom Cole, Ranking Member
Labor-HHS Subcommittee, Committee on Appropriations
U.S. Senate
Washington, DC 20510

Dear Chairwoman Murray, Chairwoman DeLauro, Ranking Member Blunt, and Ranking Member Cole:

Thank you for your support for critical public health initiatives and the Centers for Disease Control and Prevention (CDC). The undersigned organizations write to thank you for your ongoing commitment to the Chronic Disease Education and Awareness (CDEA) program at CDC and urge you to provide $6 million for this program in the final Fiscal Year (FY) 2023 Labor-HHS-Education Appropriations bill.

Both House and Senate bills include $6 million for this important new program, and that level of funding will allow CDC to continue to support ongoing projects and invest in new initiatives that increase public and professional awareness about chronic health conditions that do not have a designated funding line in the CDC budget.

CDC has awarded six competitive grants to improve public and professional awareness in the areas of hearing loss, lymphedema, obstructive sleep apnea, psoriasis, chronic obstructive pulmonary disease (COPD), and cystic fibrosis. Considering the strong demand for this emerging program and its potential to support additional meaningful efforts, ongoing growth in the program in FY 2023 is necessary to ensure a competitive process to address several additional chronic health care conditions.

Thank you again for your leadership in this important area and please consider our organizations a resource as you work to address chronic diseases through the CDEA program.

Sincerely,

Accessia Health
American Academy of Sleep Medicine
American Liver Foundation
American Lung Association
American Thoracic Society
Autoimmune Association
Circadian Sleep Disorders – Network
Coalition of Skin Diseases
Digestive Disease National Coalition
Dorney-Koppel Foundation
Dystonia Medical Research Foundation
Dystonia Advocacy Network
GBS|CIDP Foundation International
Gaucher Community Alliance
Good Days
Hope Charities
Hypersomnia Foundation
International Foundation for GI Disorders
KLS Foundation
Lymphatic Education & Research Network
Narcolepsy Network
National Alopecia Areata Foundation
National Eczema Association
National Pancreas Foundation
National Psoriasis Foundation
National Scleroderma Foundation
NephCure Kidney International
Project Sleep
Pulmonary Hypertension Association
Restless Legs Syndrome Foundation
Sleep Research Society
Society for Research on Biological Rhythms
Start School Later
US COPD Coalition
US Hereditary Angioedema Association
wAIHA Warriors
Wake Up Narcolepsy

Why I Serve on the RLS Foundation Board

By Lew Phelps, former Chair, Chair Emeritus and current member of the RLS Foundation Board, 2018 Ekbom Award recipient.

I first heard about the Restless Legs Syndrome Foundation from a cousin, Margaret McCleery Fuhr. Her father and my mother were siblings. They both suffered from what the family called “the McCleery Twitch.” Cousin Margie had recently joined the RLS Foundation’s Board of Directors. She wondered if I was afflicted. Boy, was I ever! At the time I didn’t even know what to call it, but I knew that I was having trouble sleeping. “Lew,” she said, “welcome to the club. You have RLS.” Fast forward a few years. I’m at a business meeting and strike up a conversation with a guy named Bob Waterman. Bob was a hot commodity in the publishing world, having co-authored In Search of Excellence, which was at the top of the New York Times Best Seller List. We discovered that we both had RLS and Bob, chair of the Board of the Restless Legs Syndrome Foundation, recruited me to join. I agreed, joining the Board in 2002 and eventually serving as chair.

It's clear that my own severe case of RLS gave me a reason to work hard to grow the organization and the services it offers to its members. But there were other challenges I discovered once I was on the Board:

• During my career in public relations, I saw the importance of an organization’s branding. I was thrilled to be able to work with a designer to develop a new RLS Foundation logo. It was my intention to find a way to express hope for those with RLS. This new logo would portray “light at the end of the tunnel” – and that logo has endured.
• In 2013, I got a phone call from a long-time friend, Karla Dzienkowski. Karla’s tone was urgent, “Lew, I need your help! I’ve just agreed to become Executive Director of the RLS Foundation. Will you come back?” I was up to my neck in professional commitments, but Karla is persuasive, and I agreed to serve (eventually once again as board chair).
• As the nation began to pay attention to the devastation of opiate abuse, our members reported difficulties obtaining prescriptions for their low total-daily dose opioids. The Foundation funded a long-term study to demonstrate the efficacy and safety of the drugs. Simultaneously we crafted a program to demonstrate to legislators and regulators that opioids are a safe, effective part of treatment for refractory RLS when all other treatments are rendered ineffective.
• Working together, Karla and the board developed a highly successful direct mail campaign that not only provides support, but also connects us with our members and educates everyone who receives our mail. Member support now provides stability, permitting us to increase our activities.

I guess I could have simply declared victory and, indeed, I retired from the Board. But I recently agreed to rejoin the Board to help with new opportunities that have emerged. Unlike the first time I was persuaded to join the Board, where financial and organizational issues dominated, we now have several breakthrough possibilities that should excite us all. Let me describe a couple of projects that lie ahead.

• The Foundation recently completed its second Patient Odyssey Survey, looking at the experience of over 3,400 people with RLS and their partners. The raw data – and the heart-breaking stories that some contributed – were the first time that the impacts of RLS on patients and their families were systematically documented. But the survey results were far richer than we expected. I recruited my twin brother, Dr. Charles E. Phelps, a noted healthcare economist, to analyze our materials. Working on a pro bono basis, Chuck’s analysis demonstrated conclusively the devastating effects on quality of life that this disease imposes. He and ODYSSEY II co- authors are preparing journal articles that will appear in leading professional publications, the first step toward raising research funding levels.
• There’s a new project just at the early planning stages, based on the Foundation’s data and aided by Chuck’s deep knowledge of how medical advances move from research to treatment. There’s hope that a few simple questions – like those routinely asked about depression – can drive a more robust effort to find RLS sufferers and propel them into treatment without delay.

So, I remain as excited now as I was when I first joined the RLS Foundation Board 20 years ago. I am convinced that, with your help and support, we can find a way to defeat this disease that has caused me and you so many sleepless nights and pain. I know we can do it, and I hope you will join me on this thrilling adventure.

Board Spotlight: Paul Rochester

By Clara Schlemeyer, Program Coordinator, RLS Foundation

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

A: A friend named Bob Waterman introduced me to the Foundation. You know Bob as a former chair of the board and founder of the RLS Foundation Research Grant Program. Bob and I were discussing different things when I mentioned that I had restless legs syndrome. He kind of perked up and said, “Oh, I have that, too!” So, we talked about our experiences for a while, and then he said, “I know an organization that could really use you on their board,” and that was the RLS Foundation. Bob invited me and my wife to visit with members of the board. I was very interested in the work they were doing, and Bob convinced me that my business experience would be a great addition. That was about five years ago.

Q: How has joining the board impacted your RLS journey?

A: You certainly know that you’re not alone! I have learned so much about the disease, the different treatments and the promising research being conducted. I finally switched medications to a therapy that involves opioids. I was very nervous about doing so, especially with the stigma surrounding opioid use. I learned that many others were taking opioids for their RLS, including other board members, which made me feel more comfortable. I have met a lot of amazing physicians as part of the board process, Dr. Chris Earley included. In addition, I have had the opportunity to speak with some of our very generous donors to thank them for their support. I always enjoy having a conversation with them about their experience to understand how the Foundation can help in their particular situation.

I don’t think the world understands RLS. When I tell someone that I have RLS, they often don’t know what it is. When I talk to someone who has RLS, especially a donor, they will tell me how miserable they’ve been and what they have been through to find a treatment plan that works for them. Serving on the board and speaking to others with RLS, you certainly appreciate that this is a very distressing disease, and the ramifications affecting daily life are often misunderstood.

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

A: It is so great to be around smart people who are passionate and share a common cause. That’s the way I see it. Carla Rahn Phillips, our current chair, and Karla Dzienkowski, our executive director,are both incredible and very driven. It is nice to be around people who are working hard to change the public perception of RLS, to educate the medical community; and are committed to empowering those with RLS with the information they need to advocate for themselves.

Q: How has your experience with managing high-tech companies helped you on this board?

A: Well, it’s different in many ways, but we have a lot of the same challenges. At the Foundation, we have a very different product; information is our product. As for my high-tech management experience, I hope I have contributed to the Foundation’s vision, mission and process of setting lofty goals.

Q: Where do you see the board in 2022 and beyond?

A: I expect some new members to join. We lost two great board members last year who passed away: Bob Waterman, former chair emeritus; and Ron Anderson, who was new to the board but brought enthusiasm and fresh ideas. In addition, Ron Barrett rotated off the board after serving two terms as treasurer. While some people may drop off after multiple terms, new folks will join and bring a whole new perspective. We have all missed holding meetings in person. I am hoping to attend an in-person meeting, maybe this year, and looking forward to it!

Paul Rochester is an angel investor, public and private board member, and mentor to CEOs from high-tech companies and founders at all stages seeking growth and significance. He is a trusted business advisor to numerous companies and active board member to another half dozen. Rochester brings to the board his business experience, mentorship and leadership skills, which are all invaluable to the RLS Foundation. We recently spoke about his experience on the RLS Foundation Board of Directors.

1. Start on www.rls.org/login and click on “Forgotten Username/Password” to request a password reset email. Be sure to check your "junk" folder for the email.
2. Before clicking on the link in the email be sure that you are NOT logged in to www.rls.org (home page says “Member Login” indicating that you are not logged in).

3. Create a NEW password (not used before) and write it down where you can locate it for future use. New password requirements include:
   • Minimum of 12 characters
   • One Upper Case Letter
   • One Lower Case Letter
   • One Number
   • One Special Character (Examples: @,#,$, or !)
   • Note: Password cannot include your Username or “RLS”.
4. Click on the link in the email and enter the NEW password you have created, repeat the new password in the second box, Click Submit.

5. When you receive the message: “Password updated successfully!” click on Member Login at the top of the website and enter your Username and NEW password (if your browser auto populates your password, delete it and manually enter your NEW password).
6. Click Login
7. You should see “WELCOME TO THE MEMBERS ONLY PORTAL” on your screen and “Welcome! You are now logged in.” at the top of the page.

8. As long as you see “Welcome! You are now logged in.” at the top of your screen you are logged in and have access to all materials in the Member Portal. If there is no activity after approximately 10 minutes you will be automatically logged out and the message at the top of your page will then say Member Login again.

The drug ecopipam shows promise for bringing relief to RLS patients who develop augmentation, a common side effect of dopamine medications.

Stefan Clemens, PhD, HdR, a professor of physiology at East Carolina University, is a member of the RLS Foundation’s Scientific and Medical Advisory Board, and chair of the Foundation’s Research Grant Committee. Regarding the worsening of RLS symptoms known as augmentation, Clemens developed the hypothesis, “Augmentation may be a consequence of increased D1-receptor activation in the nervous system” and that “identifying a new pharmacological target that specifically tackles the long-term side effects of standard dopaminergic treatments in RLS may keep the treatments effective for a longer time or avoid augmentation altogether.”

In other words, a dopamine-1 (D1)-receptor antagonist medication might be a new way to treat RLS and the symptoms of augmentation.

This new concept was first presented by Clemens and his group at the 2015 meeting of the International Restless Legs Syndrome Study Group. In 2016, a small pilot study funded by the RLS Foundation and performed by William Ondo, MD, suggested a positive clinical outcome when patients with RLS augmentation took ecopipam, a D1- receptor antagonist drug.

Clemens obtained a US patent for ecopipam to treat RLS augmentation, and East Carolina University has entered into a licensing agreement with Emalex Biosciences to study this first-in-class medication.

Many regular readers of NightWalkers know the basic facts about RLS treatments and the risks of augmentation, but a bit of history is useful to understand the importance of the new approach. For the 7% to 8% of the adult US population affected by RLS, some 3% need regular daily medication to control their symptoms. The Food and Drug Administration (FDA) has approved three dopaminergic drugs (pramipexole, ropinirole and rotigotine patch) for the treatment of RLS, and for decades these medications were considered first-line therapies for RLS.

Unfortunately, recent research has shown that of the patients on dopaminergic drugs, 7-8% per year develop augmentation so that by 10 years, almost 80% will be augmented and will experience a worsening of their symptoms caused by the drugs themselves. Augmentation typically includes an earlier onset of symptoms, an increase in intensity, a shorter period of rest or inactivity before symptoms start, and the involvement of other body parts (arms, torso or face). There are no FDA-approved medications for the treatment of RLS augmentation.

New clinical guidelines published in 2021 in the Mayo Clinic Proceedings no longer recommend dopaminergic drugs, but rather name iron and alpha-2 delta-ligands, such as gabapentin, first–line treatments for RLS. When a patient’s RLS becomes unresponsive to first- or second–line therapies due to augmentation or other side effects, it is considered refractory (resistant to treatment), and a low-total-daily-dose opioid therapy is the only option currently available. That is why new approaches and new drug therapies are urgently needed.

According to Clemens, ecopipam works by selectively blocking the dopamine D1-receptor subtype, whereas other dopaminergic medications that are used to treat RLS activate other dopamine receptor classes, in particular D3 and D2 subtypes. D3 and D2 receptors mediate inhibitory actions in the nervous system, meaning that they reduce excitability and thus reduce RLS symptoms. Over time, however, those effects wane and the nervous system responds with an upregulation of the D1-receptor subtype, the target of this new drug. In contrast to D3 and D2 receptor-mediated actions, the D1- receptor subtype mediates excitatory action in the nervous system, thus increasing its excitability and increasing the severity of the symptoms. The new drug, ecopipam, is thought to reduce the activation of the D1 receptor and in turn decrease the severity of augmentation symptoms.

The RLS Foundation’s executive director, Karla Dzienkowski says, “RLS augmentation is an untoward side effect of dopaminergic therapy. The potential for a new treatment for this side effect gives hope for the future for those living with the daily impacts of RLS augmentation. It could be a game changer.”

Planning Travel with RLS

Travel with RLS is possible with advanced planning to help manage unwanted symptoms during travel by plane, bus, train or car. These tips will help you to create a plan that employs several strategies to manage symptoms.

1. Make a List of Strategies that help you to cope with symptoms. Travel presents its own unique challenges for individuals with RLS. When a bout of RLS strikes, it is easier to have a list of helpful coping strategies to select from, rather than trying to remember them when symptoms are bothersome. Keep a running list of helpful things in your phone notes.
2. Get a Good Nights Sleep. A good night of sleep prior to travel will help to prevent or curb a worsening of RLS symptoms.
3. Bring Along Mental Alerting Activities such as Sudoku, crossword puzzles, needlework, video/digital games such as chess or solitaire to help to quell RLS symptoms during periods of inactivity.
   
4. Practice Mild to Moderate Physical Activity involving the limbs such as walking, yoga or stretching before, between travel connections and at the end of your journey to help in the management of symptoms during travel.
5. Book Travel Times during the early morning hours when RLS symptoms are generally least troublesome.
6. Make Seat Selection. Book or request an aisle seat so you can stretch your legs, stand or get up and walk if needed.
7. Download a Special Accommodations Card. If you don’t have access to our Member Portal you can call us and request an RLS Foundation Special Accommodations Card to present to travel personnel.
8. Know and Avoid Your RLS triggers. Avoid your RLS triggers during travel. Commonly reported triggers are alcohol, tobacco, nicotine, sugar, food, food dyes and salt. Refer to the RLS Medical Alert Card for a list of common medications that may worsen RLS, which includes most antidepressants, antipsychotics, antinausea medications and first-generation antihistamines.
9. Try Nonpharmacological Approaches to Help Manage Symptoms. Leg massage, compression stockings, foot hammock, snacks that can be eaten one at a time (cereal, popcorn, raisins) or calming teas are strategies to quell RLS during travel.
10. Don't Forget Medications. Speak to your RLS provider to discuss medication strategies (timing, dosage) or possible use of the short acting dopamine medication Sinemet to manage breakthrough symptoms during the day of travel (Note: Sinemet can be used up to three times per week as a rescue medication). Tramadol or other opioids may be very helpful to calm RLS symptoms during long flights.

Sleeping away from home presents problems for those with RLS. When you are out of your regular environment it can be difficult to stay on your usual exercise and medication schedule, but try to stick to your normal routine as much as possible. Know your iron levels and continue with iron supplementation as prescribed by your doctor. Don’t let RLS keep you from enjoying travel, plan your RLS strategies as you plan your trip. Bon Voyage!

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!

A Week to Stand Up for RLS

Advocacy is part of the important work of the RLS Foundation that we focus on year-round. Please join us April 4–8 in contacting your representatives to educate them about RLS and our advocacy priorities. To learn more about our advocacy priorities and agenda, check out our prep packet.

Virtual RLS Advocacy week is April 4th-8th and we are inviting the RLS community to participate by sharing your RLS journey with your Congressional representatives! The task may seem daunting but in fact we have outlined the process in 3 easy steps for you to contact your legislators! We have created a handful of short videos to inspire and help you in your advocacy journey.

Click here to Learn How to Find your Representatives

Once you have located your representative and their staffer’s email, your next step is to craft a clear and concise story about your RLS journey.

Click here For Tips on Crafting a Clear and Concise Story

Once you have mastered your RLS story, you will need to put it into action! You can contact your representatives via phone or email, using the information located on their website.

After you have successfully contacted your member of Congress, please send a follow-up email highlighting the information that you touched upon during the meeting or just a general thank you for the meeting.

Click here to Learn How to Follow Up with Congress

To learn why self-advocacy is so important, click here to watch a short video from Board Director Chair Carla Rahn Phillips.

To watch our other advocacy training resources, click here.

Thanks for doing your part to raise awareness of RLS and to advocate for the needs of the RLS community!

RLS Community: Provide Your Comments to CDC by April 10

Background

The Centers for Disease Control and Prevention’s (CDC) National Center for Injury Prevention and Control is in the process of updating the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain. The draft updated Clinical Practice Guideline for Prescribing Opioids is available for public comment in the Federal Register until April 10, 2022. The RLS Foundation urges all RLS community members to add their voice to request that the CDC include chronic diseases like RLS in the treatment guidelines. Below are the 5 steps you can take to let the CDC know that low-total-daily dose opioids must be included as a viable treatment option for RLS patients.

Instructions

1. Start on webpage: https://www.regulations.gov/document/CDC-2022-0024-0001/comment and click on "Comment"

2. Enter your comment using the sample comment below as a template.

3. Identify yourself as an individual, 4. Check the box for reCAPTCHA, and 5. Submit Comment.

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE COMMENT*-----

I thank you for revising the CDC Clinical Practice Opioid Prescribing Guideline, but the draft does not address chronic conditions like RLS that are different from chronic pain. Restless legs syndrome (RLS) is a chronic neurological disease that causes an urgent need to move the legs and, in some cases, other parts of the body as well. The symptoms make it impossible to sleep or even to sit quietly, which seriously affects every aspect of daily life.

In the U.S., nearly 12 million adults and children suffer from RLS. There is no cure. A few prescription medications may relieve the symptoms for a while, but over time those same medications can make the symptoms worse. When all other medical therapies fail, ample scientific research supports the use of low-total-daily-dose opioids to treat severe RLS.

[Tell your own experience with RLS in a short paragraph.]

The first physician to diagnose RLS more than 300 years ago treated it successfully with opioid therapy. Ironically, the 2016 CDC Opioid Prescribing Guidelines often made physicians afraid to prescribe opioids for any reason, even for patients with severe, unrelenting RLS who had been on the same low-total-daily-dose opioid therapy for decades. I urge the CDC to include a section in the 2022 Opioid Prescribing guidelines to address chronic medical conditions like RLS that require opioid therapy as a last resort, in low-total-daily doses, carefully monitored.

Thank you for your consideration of these vital issues, and please consider the RLS Foundation at www.rls.org as a resource for scientifically-based information about RLS, as it is for members like me.

Act NOW!

Add your comments by April 10 to be sure that the committee receives as many comments as possible from the RLS community. Please contact the RLS Foundation for assistance at info@rls.org.

RLS Foundation Certifies UPMC as Quality Care Center

The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Pittsburgh Medical Center (UPMC) in Pittsburgh as an RLS Quality Care Center.

As an RLS Quality Care Center, the University of Pittsburgh Medical Center is certified to provide expert care to patients who have restless legs syndrome, a chronic neurological sleep disorder.

An estimated 2% to 3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on quality of life. As an RLS Quality Care Center, UPMC will serve as a destination for RLS patients who need expert medical care.

“We are honored to receive this designation,” says Avinash Aggarwal, MD, director of the Quality Care Center at UPMC. “Our goal is to provide the best and most comprehensive care for patients who have RLS. Designation as an RLS Quality Care Center certifies that we adhere to the highest standards of care and will identify us as having expertise to treat RLS at all levels of severity. We are particularly proud to be the first in our region to receive this designation.”

UPMC joins a network of 11 institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for regional support groups and for healthcare providers who treat patients with RLS
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome UPMC into the Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face many challenges in managing their symptoms. Having access to healthcare providers who are highly skilled and experienced in treating RLS is essential for patients to get adequate treatment and improve their quality of life.” Dzienkowski adds, “Our goal is to help RLS patients find healthcare providers with expertise in disease management at a Quality Care Center. We look forward to our work in partnership with UPMC to advance the quality of care for RLS patients.”

Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University

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