Restless Legs Syndrome Foundation Blog

Top 5 Things School Nurses Need to Know About RLS

By Anjana Ganesh, RLS Foundation Intern and Kaleigh Maxwell, RLS Foundation Program Coordinator

Research suggests that RLS affects an estimated 1.5 million children and adolescents in the US, confirming that RLS and PLMD are not unique to adulthood. In addition to healthcare providers, friends, and family members, school nurses are often active supporters of children affected by RLS and play a significant part in ensuring the child receives comprehensive care and accommodations within the school setting.

In honor of National School Nurses Day, celebrated May 8th, 2024, the RLS Foundation wants to recognize the valuable role that school nurses play for those affected by Restless Legs Syndrome and share five important facts for school nurses to understand about RLS that can in turn help them more effectively support young students with RLS:

1. Be Knowledgeable about RLS Symptoms and Diagnosis

It is important for all healthcare providers to be properly educated on the typical symptoms of RLS, including an irresistible urge to move the leg, an onset or worsening of symptoms with rest, relief with movement, following a circadian pattern, and the exclusion of mimics. Understanding the different diagnostic criteria and recognizing symptoms in children can help identify potential cases and reduce delays in diagnosis.

2. Recognize the Impact on Sleep and Functioning

RLS can significantly affect a student’s sleep quality leading to daytime fatigue, irritability and difficulty concentrating in class. Recognizing chronic exhaustion can prompt discussions for appropriate interventions and support strategies.

3. Familiarize Yourself with Common RLS Triggers

Be familiar with common triggers for RLS like stress, caffeine, and medications. Encourage students with RLS to adopt healthy lifestyle habits like regular exercise, stress management and a balanced diet.

4. Educate Other School Staff

Ensure that teachers and other staff members are aware of RLS and how it can impact a student’s well-being and academic performance. Work with staff members to create accommodations to help manage RLS during school (like seating in back of the room to permit standing or stretching during classes, priority scheduling of courses and 504 designation, if indicated).

5. Collaborate with Healthcare Providers and Families

Establish open communication channels with both the healthcare providers and families of students diagnosed with RLS or actively seeking a proper diagnosis. By contributing to student care plans, it helps ensure consistent support both at school and home.

By understanding the complexities of Restless Legs Syndrome (RLS) and implementing appropriate support strategies, school nurses can make a meaningful difference in the lives of affected students. Through collaboration with healthcare professionals, families, and educators, we can ensure that students with RLS receive the necessary care and accommodations to thrive within the school setting. Together, let us work towards creating an inclusive and supportive environment where every student affected by Restless Legs Syndrome can reach their full potential!

For additional resources and educational material, visit the RLS Foundation website.

You Can Still Go to Harvard: Leaving a Legacy Through Brain Donation

By Karla Dzienkowski, RLS Foundation Executive Director and Adrianna Colucci, RLS Foundation Communications and Marketing Coordinator

We all leave a legacy by imparting values to our family, friends and everyone we’ve touched in our communities. But have you considered extending your legacy to future generations scientific research? May 7 is National Brain Donation Awareness Day. Your brain is an intricate and complex network, making it an invaluable gift to research. Neuroscience advances our understanding of the nervous system and neurological disorders, including RLS. This insight may ultimately lead to developing more effective treatments and potentially a cure.

The Harvard Brain Tissue Resource Center (HBTRC) facilitates the collection and distribution of brain tissue, which is then made accessible to medical researchers. The HBTRC is one of six centers belonging to the NeuroBioBank (NBB) network, funded by the National Institutes of Health, and houses the Foundation’s tissue collection. For the past few years, the RLS Foundation has worked closely with agency leaders, including HBTRC Director Sabina Berretta, MD, to consolidate the process of proper identification of RLS brain donations. Collaboration among these organizations is essential for spreading awareness and making tissue available for distribution to RLS researchers.

Preregistration for brain donation is also available through The Brain Donor Project, a nonprofit dedicated to increasing awareness and simplifying the donation process. Tish Hevel, CEO of The Brain Donor Project, partnered with the NBB to help potential donors get connected to one of the brain banks in their network.

Though these conversations can be difficult, now may be the time to introduce the topic of brain donation to your family. Your family or next of kin will play a large part in honoring your wishes for donation, so preparation is important. Though preregistration is not required for brain donation, it can be helpful for potential donors and their families. Below are some quick talking points to help with the conversation.

• Brain donation is open to everyone, regardless of whether or not they are affected by a nervous system disorder. In fact, it is equally important for researchers to have access to brains that are not affected by a nervous system disorder. The “control” brain allows for comparison and furthers knowledge of the brain in general.
• Being an organ donor does not automatically make you a brain donor. There is a separate consent process specific to brain donation.
• Just one brain can have a massive impact, potentially providing data for hundreds of studies.
• Due to support from the federal government and foundations, there is no financial obligation to your family for the recovery, shipment, processing or distribution of a donated brain.

Whether you register through The Brain Donor Project or HBTRC, you can still go to Harvard. Let your next of kin know that you want your tissue to go to the HBTRC as part of your end-of-life planning and provide them with the phone number to HBTRC: 1-800-BRAIN BANK (1-800-272-4622).

There is much to learn about how you can further your legacy through brain donation. If you have additional questions, be sure to visit the FAQ page on the HBTRC website at hbtrc.mclean.harvard.edu or The Brain Donor Project at braindonorproject.org. All registration forms are available on the website. Thank you for your consideration of leaving a gift that will have a lasting impact on the RLS and medical community.

Advocacy Action Alert: Support Sleep Disorders in the Peer-Reviewed Medical Research Program

Dear RLS Community,

The United States Senate is currently crafting the FY 2025 Department of Defense (DoD) appropriations bill, which will determine which medical conditions are eligible for research funding through the Peer-Reviewed Medical Research Program (PRMRP). Today, we need your help to ensure “sleep disorders” are included in the PRMRP for FY 2025! Take action now by contacting your state’s Senators to ask for their support.

Why It’s Important: The DoD PRMRP is a program designed to support research that enhances the health and well-being of military service members, veterans, retirees, and their family members. Restless Legs Syndrome (RLS) is a major sleep disorder that affects an estimated 40,000 active-duty military personnel. Including “sleep disorders” in the PRMRP allows researchers to compete for $370 million in federal research funding each year.

Action: Please contact your Senator and ask that they support the inclusion of “sleep disorders and restrictions” in the DoD PRMRP’s eligible conditions list in FY 2025. The last day to contact your representative is Monday, April 29.

How to Participate:

1. Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action with the subject line: PRMRP RLS Advocacy Action Alert. Provide your mailing address and zip code to help Matt identify your Senator and connect you with the correct staffer.

Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we know which offices have been contacted.

2. Once you receive a response from Matt, email your Senator. You can copy and paste the sample message below:

Sample Message:

Subject line: FY 2025 DOD PRMPRP

Dear [Staffer Name],

My name is [your name] and I am a constituent of [insert representative’s name] and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please support the community’s FY 2025 request to ensure that sleep disorders and restrictions are once again included in the DoD PRMRP’s eligible conditions list for FY 2025.

[Please briefly share your personal story in 2-3 sentences.]

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

3. Personalize your message by briefly sharing your RLS story in 2-3 sentences. 4. Send!

Just a few minutes of your time could help influence the future of sleep-related research funding. If you have any additional questions, please reach out to info@rls.org. RSVP to our Facebook event page to stay up-to-date. Thank you for your support as an RLS and sleep advocate!

Advocacy Action Alert: Support Sleep Disorder Research

Calling all RLS advocates! The United States Congress is currently working on the annual spending bills for FY 2025. Congressman Adam Schiff is leading an official congressional sign-on letter, asking to prioritize funding for sleep disorders awareness and research. To increase support for this letter, we ask that you reach out to your congressional House representatives today!

Why It’s Important: This letter asks the House Appropriations Committee to address the critical needs of the sleep community. Though there is strong scientific evidence of sleep’s critical role in overall health, the CDC only has a few narrow sleep programs. It is important for the CDC to strengthen this foundation and modernize sleep public health, education, and awareness activities.

Action: Please contact your House representative and ask them to sign a Congressional letter in support of federal research, scientific advancements, and public health efforts – focusing on sleep health and sleep disorders within the Committee Report accompanying House FY 2025 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) Appropriations Bill. Your representative must sign-on by Monday, April 29th.

How to Participate: Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action. Be sure to provide your mailing address and zip code to help Matt identify your representative and connect you with the correct staffer. Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we can track which offices have been contacted.

Please email the staffer, attach the sign-on letter, and ask for their support. You can use the sample message below to assist with your outreach.

**Sample Message**

Dear [Staffer Name],

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please join the community’s FY 2025 appropriations sign-on letter to advance medical research in sleep, circadian, and sleep disorders, and improve public health. I have attached a copy of the letter and its corresponding Dear Colleague to this message and ask that you sign on to this critical letter. To sign on, please complete this form via Quill and please contact Kaitlyn Kelly at Kaitlyn.Kelly@mail.house.gov with any questions.

[Please briefly share your personal RLS story in 2-3 sentences.]

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

****

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Last year because of our advocacy efforts, the sign-on letter attracted numerous bipartisan supporters and we are hoping to attract even more support this year to demonstrate our growing influence on Capitol Hill and impact on medical research and public health.

Thank you for your support as an advocate! Connect with us and RSVP on our Facebook event page for more information. If you have questions, please email info@rls.org.

When Should I Visit an RLS Quality Care Center?

This article is based on the QA from the webinar titled “When to Visit an RLS Quality Care Center,” presented by Avinash Aggarwal, MD. Dr. Aggarwal is the Quality Care Center Director at the University of Pittsburgh Medical Center in Pittsburgh, PA. The complete webinar recording can be found in the Member Portal on www.rls.org.

1. What is the desired outcome of a visit to a Quality Care Center? Reduced symptoms? Lifestyle changes? Dietary changes? Exercise?

When visiting a QCC, all of these issues are addressed. A thorough medical history of past and present medications, including supplements and over-the-counter medications, will identify potential RLS triggers. Physicians and patients work together to determine the desired outcome of their visit.

2. How do you ensure you will get assigned to the expert who can treat your severity of RLS?

Only the providers listed on the RLS Foundation website at www.rls.org/treatment/quality-care-centers are certified RLS experts. Patients should thoroughly research each physician on the Foundation website and ask for an appointment with the provider that is close in proximity and is a fit for all healthcare needs.

3. Which medical records do you bring to your first appointment?

Bring all medical records available and send them ahead of time, if possible. Medical records include physician notes, a list of previous medications and their side effects, current medications, and test results, specifically results from a complete iron panel.

4. What does a QCC offer me if I have a local doctor and have already tried all known classes of medications?

QCC providers think outside of the box, considering the patient’s complete history and a comprehensive neurological examination. All patients are administered the International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) on both their initial and subsequent visits. With adequate treatment, the severity rating can decrease from high to extremely low, sometimes zero. As experts in the RLS field, QCC certified providers can identify triggers and treat patients based on the latest guidelines.

5. What should I expect from the first visit, and can follow-up visits be done remotely?

The first visit is typically about an hour long. A QCC provider performs a thorough history and examination, reviews the current treatment plan, and discusses available therapies. The International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) is also administered on the first visit to gauge RLS symptoms. A tailored treatment plan is developed for the patient utilizing a shared decision-making process. Follow-up visits can be done remotely.

6. How can we find the QCC closest to where we live? Is there a list of locations?

There are 10 QCCs in the United States and two in Europe. A list of all centers as well as contact and appointment information is available on RLS Foundation website. If you need assistance, contact the RLS Foundation at info@rls.org.

7. How long is the wait time for an appointment?

Every center is different and wait times are variable. At the QCC in Pittsburgh, there is a cancellation list that reduces waiting time.

8. What training and expertise do the QCCs have that sets them apart?

QCC physicians are board-certified in sleep medicine and many are neurologists. All QCC providers abide by the latest RLS treatment guidelines and provide comprehensive care. QCC physicians undergo a rigorous process to be credentialed.

8. If I have visited a QCC in the past, are there any reasons I should visit one again?

If symptoms are not controlled, if there are significant side effects, or if a patient is not satisfied with disease control, another visit to a QCC may be considered.

10. Are Canadians able to visit the QCCs?

QCCs welcome patients from around the world. Patients should speak to their insurance company to determine if there is coverage or if there will be out-of-pocket expenses.

11. Can out-of-state quality care centers continue with opioid therapy?

Opioid therapy coverage depends on individual state and insurance company regulations.

12. Is there a QCC available for consultations and treatment for out-of-state patients who are not able to travel?

Since COVID, some out-of-state appointments are available. Coverage will depend on the insurer and out-of-pocket expenses may apply.

Meet the RLS Foundation's Newest Team Member!

By Adrianna Colucci, RLS Foundation Communications Coordinator

Anjana Ganesh is a senior at the University of Texas at Austin (UT). She recently joined the RLS Foundation as an intern for the remainder of her senior year. In her free time, she enjoys reading, dancing and taking walks around Austin. The RLS Foundation is excited to have her join the team!

Q. What motivated you to pursue this internship opportunity?

A. I am part of UT’s Bridging Disciplines Program, where we are exposed to interdisciplinary classes. My certificate is called Patients, Practitioners & Cultures of Care. As part of the certificate, we are required to complete an internship, and I was really interested in learning more about the nonprofit side of healthcare. I discovered the Restless Legs Syndrome Foundation in an old blog post by my program. Upon delving into its mission and objectives, I found it to be an ideal fit for me. Not only did it align with my background in neuroscience, but it also presented me with an opportunity to explore a new dimension of healthcare.

Q. What has been the most exciting part of working with a new team?

A. It has been so exciting to work at the RLS Foundation! Each person I interact with has a unique skill set, ideas and perspectives, and everyone is so willing to let me learn. I’ve found that this diversity sparks stimulating discussions, leading to fresh approaches and innovative solutions to challenges. Everyone is so supportive and kind, which creates an incredibly compassionate atmosphere where I feel comfortable sharing ideas and asking questions.

Q. You recently wrote articles for the upcoming Spring 2024 edition of NightWalkers, the Foundation’s quarterly magazine. How has writing for the magazine magnified your understanding of the adversities the RLS community faces?

A. It has been such an incredible learning opportunity to write for NightWalkers. My focus has been exploring the intricate relationship between iron and RLS, a topic that has led me to delve deep into scientific literature and conduct insightful interviews, particularly with experts like James Connor, PhD, MS. Through these interviews and research for my articles, I’ve gained a comprehensive understanding of the scientific underpinnings of RLS, particularly regarding its connection to iron deficiency. By synthesizing information from various studies and expert opinions, I’ve uncovered the complexities of how iron levels impact RLS symptoms and the potential mechanisms at play. In my research, I discovered how hard it is to find easily accessible, accurate and concise information outside of the Foundation materials. Even after finding the materials, some studies are exceedingly complex, so it requires a lot of scientific background to understand what is happening.

Interviewing Dr. Connor has provided invaluable insights into the latest research findings and treatment approaches related to iron deficiency and RLS. This has broadened my understanding of the subject matter and equipped me with the knowledge to effectively communicate these concepts to NightWalkers readers.

Q. What have you learned about RLS and why do you feel it is important to increase awareness of the disease?

A. I’ve noticed how RLS is often misunderstood or misdiagnosed, leading to delays in receiving appropriate treatment. Many individuals with RLS may suffer silently, unaware that their symptoms are indicative of a medical condition that can be managed with proper intervention. Oftentimes, physicians aren’t familiar with RLS, and that’s why resources like the Foundation’s network of RLS Quality Care Centers are so important. I think that raising awareness of RLS is essential to ensure timely diagnosis, enhance support for affected individuals, and promote advancements in research and treatment.

Q. You aspire to have a career in the medical field. How will you employ your newfound knowledge of RLS in the future?

A. As a future healthcare professional interested in pursuing neurology, I hope to integrate my understanding of RLS into my approach to patient care. By recognizing the symptoms and implications of RLS, I can effectively assess and address the needs of individuals affected by this condition. Additionally, this internship has introduced me to the importance of medical advocacy and the need for more funding and research. I hope to contribute to advancements in RLS diagnosis and treatment by advocating for improved access to resources and research funding.

The American Academy of Sleep Medicine Invites Public Comment

The American Academy of Sleep Medicine (AASM) is inviting public comment through April 9th on the newly drafted clinical practice guidelines and systematic review of the Treatment of Restless Legs Syndrome and Periodic Limb Movement Disorder. These new guidelines will synthesize the RLS treatment therapies that are now recommended for adult and pediatric populations, updating the previous 2012 AASM RLS guidelines. In these guidelines, treatments were scored as either “strong” or “conditional” (strongly for, strongly against, etc.) The systematic review provides further insight and research data to support the accompanying guidelines. A video overview highlighting the signifcant changes is also available.

Interested members of the public are encouraged to provide feedback on the drafted guidelines to the AASM. From healthcare professionals to advocacy groups to RLS patients and caregivers – all can provide important comments. Varying evidence has value, including both clinical experience and published articles. Public participation ensures that the guidelines meet the needs of the medical and RLS patient communities. Responses should include questions and perspectives that are appropriate, respectful and relevant to the subject.

Comments can be made Tuesday, March 12th through Tuesday, April 9th. To submit comments, complete the disclosure form and email it alongside your comments and questions to ukazmi@aasm.org.

Revisions to the draft guideline and systematic review are at the discretion of the task force, but all submitted comments will be considered and responses internally documented before the guidelines are submitted to the AASM Board of Directors for approval for publication in the Journal of Clinical Sleep Medicine.

Disclaimer: The recommendations in the clinical practice guideline manuscript are in draft form and are still subject to substantive changes by the time they are published in final form. They should not be copied, disseminated, or implemented until final publication.

Helpful Abbreviations

• AASM: American Academy of Sleep Medicine
• CPG: Clinical practice guidelines
• CST: Clinical significance threshold
• IRLSSG: International Restless Legs Syndrome Study Group
• PICO: Patient, Intervention, Comparison, and Outcomes questions
• PLMD: Periodic limb movement disorder
• QOL: Quality of life
• GRADE: Grading of Recommendations Assessment, Development and Evaluation methodology
• RCT: Randomized controlled trial
• SR: Systematic review
• TF: Task force
• WASO: Wake after sleep onset

Translation from Generic Brand Name to Common Brand Names

• Bupropion: Wellbutrin
• Cabergoline: Dostinex
• Carbamazepine: Tegretol
• Clonazepam: Klonopin
• Dipyridamole: Persantin
• Ferric carboxymaltose: Injectafer
• Ferrous sulfate: various iron brand names
• Gabapentin enacarbil: Horizant
• Gabapentin: Neurontin; Gralise
• Levodopa: Sinemet
• Low-molecular-weight iron dextran: INFeD
• Oxycodone: Oxycontin
• Pramipexole: Mirapex
• Pregabalin: Lyrica
• Transdermal rotigotine: Neupro patch
• Valproic acid: Depakote