RLS can be a very lonely nervous system disorder. Family, friends and even healthcare providers are not familiar with or knowledgeable about RLS. The RLS Foundation works very hard to increase awareness and publishes an exceptional newsletter as well as many other educational materials. The Foundation has not only provided me educational opportunities to learn about my RLS, but also facilitates networking within a growing community.
Two weeks ago, I attended the Foundations Patient Symposium. This was the absolute BEST conference I have ever attended over a 35 year nursing career. I feel so empowered and better equipped to deal with my RLS
I've had RLS for 40 yrs. Since finding and becoming a monthly supporter of the foundation I've been educated beyond my wildest expectations. I've suffered in silence for 30 yrs and for the past 10 yrs have had the relief I so coveted for years.......... because of the education and support of the RLS foundation. Cannot rank this foundation higher. It has 'saved the quality of my life'!
I cannot say enough good things about the RLS Foundation. I am both a volunteer and a "client served" in your list, but I choose "client served" as the most important. My first introduction to the RLS Foundation was through its online support group (the"discussion board" at bb.rls.org), whose members and moderators I credit with saving my life. The disease we have is poorly understood by most health professionals, and the discussion board provides an arena for patients to share knowledge about the disease, how to approach doctors who need that knowledge, and how to cope.
But the discussion board is just one facet of the Foundation. I'll describe some of my favorite things below, but I can't describe all that they do. The Foundation works hard to get funding and evaluate and award grants to RLS/WED researchers. These researchers have been pushing our understanding of the disease forward every year, and it's directly due to them that better treatments have become available. They also seem to have a great relationship with the Foundation, many of them giving their own time, serving on the Medical & Scientific Advisory Board, and participating in such Foundation efforts as the remarkable webinar series (in which a researcher or clinician presents information for patients and answers questions on a specific RLS/WED-related topic), the recent extremely well-organized Patient Symposium, and creation of informative publications. I've used/attended all of these tools/events, and learned so much about the disease and how to manage it, and been given hope for the future.
The Foundation publishes a quarterly magazine for patients, and a series of brochures and pamphlets containing information about various aspects of the disease, including a special series aimed at healthcare providers, which is so important because this disease is so poorly understood among non-specialists. I frequently advise other patients to give their doctor this or that specific pamphlet; the publications are focused and well-written and professional. There's also a blog, an active facebook page, and it seems more and more ways to reach people, which is great, because different approaches appeal to different people and they're trying to reach as broad an audience as possible.
The Foundation's efforts to raise awareness of the disease have been tireless lately... awareness among the general population, within the medical profession, and in government, where policies being made can unintentionally affect RLS/WED patients in a bad way. They've created the Quality Care Center initiative, which not only helps patients find qualified help but raises awareness of the disease. I am so impressed with the energy of the people who are making the Foundation achieve its goals. It's enough to make me believe that some day I may live a normal life. I am forever grateful for all they do.
In the throes of the worst RLS I'd ever experienced and a doctor who was making it worse, I found the RLS Foundation's Discussion Board. The members told me of an educational event the Foundation was holding in California; I bought plane tickets, asked a friend in Long Beach if I could sleep on her couch, and off I went. All within one week - quite the leap of faith.
That event saved my sanity and likely my life. I found the information I needed as well as the support of some very special people.
I started to volunteer a year or so later and still do today. I cannot say enough about the staff; they keep telling me how much they appreciate me, when they truly are the ones that are exceptional. I also am fascinated by the people who frequent the Discussion Board; they are so generous and helpful with their support and information, it gives me faith in humanity on a daily basis.
The RLS Symposium was by far the most life changing event for me to date. I could never have the ability, time or money to put forth in order to obtain accesses to the medical professionals, education and information that they afforded me. I will do my best to help the RLS foundation continue their much needed and appreciated efforts to bring hope and healing for RLS patients around the country. A very heart felt THANK YOU to the RLS Foundation
The RLS Foundation has connected me with experts and fellow RLS people. The connection has changed my life for the better. The Patient Symposium was an opportunity to talk 1:1 with experts in the field and gain greater understanding of a condition I have had all my life.
The recent patient symposium was transformational. Yes great speakers and organization, but the sharing of information through the Whova app made everything better. We RLS’ers have felt alone for so long, it was wonderful to feel the camaraderie. As a former board member, it is so gratifying to see how the organization has matured.
The people leading this organization truly care about their members and the problems that they face. They recently carried out one of the best and most educational And helpful conferences that I’ve ever attended.The speakers were the experts in RLS from around the nation. The information that they shared literally changed the lives of the attendees. The money that they raise goes to research and advocacy for the needs of RLS Sufferers. Their communication with members is exemplary and continues throughout each year. They work tirelessly to raise awareness with doctors and politicians who make decisions about needed medications. This organization deserves 10 stars!
For many years I suffered every night with restless legs and the inability to get a full night's sleep. My primary care physician attempted to treat me and was successful for a few years. However, the longer I was on the prescribed drug the less effective it became and the worse my symptoms were. I did an internet search and found the RLS Foundation. It was a lifesaver! To see other's stories and the many ways that they attempted to alleviate their discomfort was helpful to know that I was not alone. In addition to sharing stories, the RLSF also maintains a list of qualified providers and certified treatment centers. I was fortunate to be in an area where one of the most prominent leaders in the field practiced and he has managed my RLS now for years. I was so impressed with the RLSF's commitment to research and easy access to staff to answer any questions or just to talk about my disease. Last year I was invited to be considered for a board of directors position and now am a board member. The level of commitment of all of the board members and staff is exceptional and we are all in search of finding the cause and a cure for RLS by funding research through the generous donations of our members.
I have been an RLS patient since childhood. Now in my late forties I have learned how to live with a quality of life I never knew was possible as compared with the decades I was suffering in ignorance. The foundation led me to knowledge, awareness and treatment for the condition. I tried many, many things to ease the discomfort in my legs with no success. It became a 2nd job, searching out ways to eliminate the discomfort. When I learned of the foundation I realized that I was not even close to alone. That this condition is much more common than I ever thought. Through my participation in the foundation I've met people who have lived my story, professionals that have helped me find the best solutions so I sleep with ease. This foundation is changing lives for the better, I am truly grateful to be a part.
When I was first diagnosed with RLS, my doctor simply gave me a prescription and sent me on my way. Fortunately, I found the RLS Foundation and the information that they provided help to educate me on what I needed to do to better control my condition. I have been a volunteer with the Foundation ever since and am in total support of the work that they do in funding research and advocating for this widespread, yet totally unrecognized condition. Without the Foundation, I would not be able to live the life in retirement that I always envisioned.
Shortly after I retired, I started having problems sleeping. The doctor that I consulted was of no help. After suffering for several years, I was finally diagnosed with RLS by a different doctor. Unfortunately, this doctor provided me with virtually no information about the disease. All of this is common for patients with RLS. While trying to educate myself, I came across the RLS Foundation. Not only did I find the information that my doctor did not provide, but I also learned about the research that is being done, the various treatments available and the fact that I was not alone with the experiences that I was having. My treatment went well for about two years, but then the medications stopped working. My doctors were of little help, but through the information that I had gained from the Foundation, I knew that I was augmenting on the drugs that were provided. This allowed me to find a new doctor who not only knew how to treat my augmentation, but who was not intimidated by the knowledge about treatments for RLS that I had gained through the Foundation. I am now almost symptom free for the first time in almost 8 years and am able to get a normal night's sleep. None of this would be possible if not for the information provided to both patients and doctors by the RLS Foundation. This is a relatively new disease that many doctors did not learn about in med school, so getting proper care from doctors can be a challenge. But progress is being made. Research being funded by the Foundation is finding more about the causes of the disease and awareness within the medical community seems to be increasing not only from the publications generated by this research but also from Foundation participating in relevant medical conferences. Without their efforts, thousands will continue to suffer due to the ignorance of doctors of even the existence of this relatively common disease.
I have had RLS for about 25 years and essentially diagnosed myself, as my doctors at a major teaching hospital in the United States had never heard of it. Thank goodness, they were willing to learn, and based on what information we could find, I tried iron supplements and various other medications for a number of years, then the generic for Requip (ropinerol) for about 10 years. Fortunately, I never developed augmentation, but eventually the ropinerol was not effective. About the time my doctor switched me to the generic for Mirapex (pramipexole), I found the RLS Foundation on the internet. The foundation is a wonderful source of information and support, and I recently joined its Board of Directors, thanks to the sponsorship of a college classmate who is a long-time member of the organization. I am looking forward to working toward the three main goals of the RLS Foundation, especially the goal of raising awareness of this surprisingly common and often devastating disease.
So grateful to Restless Legs Syndrome Foundation. I've had RLS since 1995 and really appreciate all the support and research they've done since 1992. Happy 25 Year Anniversary!
The ED is so amazing and knowledgeable. The entire staff is helpful and on the ball! It has been a pleasure working with all of them.!!
Incredibly responsive staff! Answered questions, provided contacts with knowledgeable physician nearby, and supplied clear printed materials. Grateful for support group,thewebinars, and the newslette.
This is a terrible disease; the Foundation is a great ally.
I've had restless leg for years. It started to get worse when I was pregnant with my 3rd child. Surprise, surprise I was anemic. I have been trying to get my ferritin up every since, 15 years now. I also have inflammatory arthritis which also adds to my anemia of chronic disease. Strike two! RLS foundation gave me some suggestions on how to take iron so it will absorb better. Also, advise on antihistamines, which can make RLS worse. They were very quick to answer my questions. Thankful for RLS and all their work.
My name is Judy Lyons and I live in Lubec, Maine. I found RLS Foundation Inc. one night when I could not lie down and try to sleep because of this god awful disease. I think I may have even had RLS when I was a kid, but did not know it. I have been treated for RLS for at least 10 years. The biggest problem I have is living in a rural area too far away to find a good RLS doctor. The first medication I was put on was Requip. At first this helped a lot, although it made me nauseous every night I took it. Then my RLS kept getting worse and worse and starting earlier in the day. Most days I was in agony trying to set at my desk to do my job (Receptionist at the local Medical Center). Then I was searching the internet about RLS, trying desperately to find some help and I discovered AUGMENTATION. So I knew I had to get myself of Requip. I did not know I should wean off the dose I was on so I just stopped taking it. Sure wish I knew about RLS Foundation at that time! Needless to say I went through living hell getting off the Requip. I lasted almost 3 months, with only bits and pieces of sleep, most nights was just up walking the floor and rubbing my legs all night. Then I would have to go work all day. It was an experience I never want to repeat. Finally I could stand it no more, so I went to the doctor who I was seeing at the time (they changed frequently at the Medical Center for a few years) and she thought the answer was a sleeping pill. Well I really didn't think that would help, but I tried it. That of course made RLS worse. So then tried a different medication (don't remember what now) and that did not help either. Then Klonipen, the short time I took this it did help. But then I found out with this medication I would have to do urine checks and pill counts every month and my insurance did not pay for that, so I go off that medication. ( I would like to remind you that I work with these doctors every day, not like they only see me once in a blue moon). The I tried Horizant when that came out, could not take that, made me feel really funny. So the next medication was Lyrica, and I must say that worked like a dream, although had to keep upping the dose. Then in 2014 I had a hysterectomy and was on pain medication for a couple of weeks, no RLS!!! When I stopped the pain med, the Lyrica also stopped working, I was on 450Mg a night by then. My doctor did not want to up the dosage any more. So she prescribed Mirapex. Told her I did not want to take another dopamine drug (had learned all about it by then). She said the only she could give me, and unless I tried it no pain specialist would prescribe anything different (had to rule it out) So I started the Mirapex at .25mg, then went to .5 mg, now at .75 mg. I reluctantly went to the .75 but could not take the RLS anymore. I find the .75mg works a little better than the .5, but it does not give me relief every night. I am so tired of being treated like a guinea pig by the local doctors who do not know much about RLS. I shared a copy of Night Walkers with her a few weeks ago, hoping she would learn something. But would not really matter if she did, since she is leaving in 3 weeks anyway. So now I will have to go to yet another doctor, just praying for one that knows something about RLS, or at least believes what you tell them you are going through. - I have learned so much about this disease from the RLS Foundation site and facebook page, and I am so thankful for all the research you are doing, Hoping against hope someday there will be help for people like me. It is so nice to have people know how you feel and not laugh at you. So from the bottom of my heart I thank the RLS Foundation for all that you do.
As an academic Neurologist and Sleep Specialist at Vanderbilt University Medical Center, Nashville, Tennessee, I have found the RLS Foundation to be an invaluable resource and aid for my patients suffering from Restless Legs Syndrome. In addition to helping individuals who suffer from this condition with emotional and informational support, they have helped us carry out our local Nashville support group meetings for RLS patients and their families. The RLS Foundation newsletter is an important source of information for patients and physicians with its emphasis on proper diagnosis and treatment and the latest research on RLS and its allied condition, Periodic Limb Movements in Sleep (PLMS). The Foundation also is responsible for getting well placed articles on RLS into the broader media, further educating the public about this oftentimes serious condition which through insomnia can impair the quality of life. A small research grants program funded by the Foundation stimulates investigation into new possible causes and treatments. Art Walters, M.D. Professor of Neurology, Sleep Division, Vanderbilt University Medical Center, Nashville, TN.
The RLS Foundation in the last few years under the new leadership of Foundation board chair (Phelps) and Foundation director (Dzienkowski) has pulled the Foundation out of a major nose dive. It has work very hard to prove itself worthy of the patients, which it purports to serve by focusing on advancing awareness of disease, by educational efforts both in the clinical and scientific community, and by supporting research for new treatment options.
The Restless Legs Syndrome Foundation is THE reliable source of information about this horrible disease - and much more. In the past year, the RLS Foundation has tripled its commitment to funding research that will help to improve treatments and find a cure. It is advocating to protect patients' right to obtain medications that are known to be helpful in the treatment of RLS, but are threatened with unnecessary restrictions. RLS researchers who participate on a volunteer basis on the organization's Science and Medical Advisory Board were in the forefront in identifying the serious problem of augmentation of symptoms from a class of drugs that has been widely used to treat RLS (dopamine).
I and my fellow Board members at the RLS Foundation are committed to the organization's main goals - improve treatment, find a cure, and increase the knowledge of RLS among patients, their families, and medical service providers. I donate many hours each week to the work of the Foundation because I know it is the best resource of accurate information about RLS and the only philanthropic organization that funds RLS research.