Restless Legs Syndrome Foundation Blog

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.