RLS Research

The Restless Legs Syndrome Foundation is a non-profit organization providing the latest information about RLS. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals.

Many understand that the above goals are the cornerstone of the RLS Foundation. Many and more have benefited from what has been achieved so far. There is increased awareness, even if it isn't always positive. The FDA has now approved three medications for RLS/WED that weren't there just a few years ago. Research is ongoing for better and more medications. Even better, research is happening that might someday lead to a cure.

Facebook has been full of posts lately that have been negative about current research that links RLS/WED to high blood pressure. "We already knew that." "It was wasted money." "Why didn't they research something more important?" Good comments and valid questions. Who knows what the reasoning was behind granting the funds for the research? I've seen many cases of research money spent that seemed to be redundant or just plain silly. Maybe there was more to this than we understand. Maybe not.

Such is not the case for the RLS/WED Foundation. Since 1997 and the inception of the grant program, the RLS Foundation has honored promising scientists whose work addresses the goals of the Foundation. The RLS Foundation encourages grant applications for basic and clinical research studies of restless legs syndrome (RLS). Basic science leading to a better understanding of RLS, innovative approaches, interdisciplinary studies, and support of promising postdoctoral candidates is given funding priority. Since 1997, the RLS Foundation has funded 38 research grants for a total of $1.4 million.

These grants have been for research in the areas of genetics, iron regulation, neurophysiology (the nervous system), epidemiology (a branch of medical science that deals with the incidence, distribution, and control of disease in a population), and dopamine.

The Foundation can and does choose which research grants sound the most promising. Since RLS research money is very limited, these are all small grants used to stimulate interest and provide data for larger grants at either the National Institute of Health or the Canada Institute of Health Research. So far, these grant recipients have published 23 papers and three book chapters with an additional six manuscripts and two book chapters in process.

Unless you are an extremely rich philanthropist, most of us cannot fund research. However, your donation of any amount to the RLS/WED Foundation can be earmarked by you to go only to research. So if you are unhappy about what you read online, make a donation to the Foundation. Every dollar spent on research brings us that much closer to a cure.

What Will You Be For Halloween?

October. Fall. Colored leaves falling to the ground. Pumpkins, cider, harvest moon, hay rides...it all adds up to my favorite time of year. I love the cool days and cooler nights. I love to snuggle under blankets at night; I love to sleep and sleep and sleep. Wait a minute; something in this just is not tracking. (Fall, leaves, pumpkins, snuggle, sleep...) That's it! Sleep! I never get enough sleep!

Despite the lack of sleep, I do love this time of year. There's just a different feeling in the air that doesn't come from cooler weather or falling leaves. For me, it all stems from my childhood. When I was growing up, October was full of excitement all month long. Halloween costumes were in the making--no purchased masks for us! We drew pictures of costumes, begged and borrowed clothes, raided Mom's makeup bag and Dad's shoe closet. At various times I was a princess, a bum, a ghost and a fairy. The Halloween costume that stands out in my mind the most though was Blackbeard, the Pirate.

Dad shredded the bottoms of a pair of my jeans (much to my Mom's dismay!) and made me a really cool pirate sword out of cardboard and aluminum foil. I had an eye patch and a bandana around my head but the best part was the black makeup Dad used to make it look like I had a beard. Which was also the part that made it all so memorable. It didn't wash off. I don't know what he used but I went around for days with blonde pigtails and a five o'clock shadow.

This isn't my normal blog about RLS; I just wasn't in the mood. Halloween is almost here and hopefully you can feel the same shivering excitement in the world around you as I do. Life is too short to let RLS control everything, all the time. Have fun! Since we're up most of the night anyway, go trick-or-treating! Tomorrow we may be sleep-walking zombies but if we are, let's just it make part of our Halloween costume.

Moon and Stars,
Kathy

But What About....?

I talk to a lot of people about RLS/WED; at support group meetings, discussion boards, blogs and just people I meet. It's amazing how much MIS-information there is out there about RLS/WED--as my friend says, "It fairly boggles the mind!" In any search for information, please make sure you have reputable sources.

But lots of "information" I hear is centered around the Foundation itself or the Board of Directors. Someone once told me that they would not donate to the Foundation because of all the millions of dollars we accept from pharamceutical companies. If that's whats holding you back then read this; many years ago the decision was made not to accept money from these companies, for very good reasons. That holds true today. The only money accepted from pharma companies are an occasional grant for hosting patient meetings.

So here's your chance. Ask those questions and I will answer them the to the best of my ability. Have a comment about how something is done? Let me know. Have constructive suggestions on what needs to be done? Send them on. We're all in this together, even when it feels like you are the only person in the world with RLS/WED. So start thinking: But what about...?

Moon and Stars
Kathy

Tell Me About It

September is RLS Awareness month. September 23 is National RLS Awareness Day. Many of us who suffer with this terrible disorder will be holding special support group meetings, contacting the mayor to inact RLS Awareness Day, sending letters to the editor of the local newspaper or putting information out wherever possible. So who is? What are you doing to promote Awareness Week/Day? Tell me about it.

There are people out there who work tirelessly as support group leaders; not an easy job! Some people watch the internet and respond quickly and loudly to negative or misleading information. Many support each other on facebook or the RLS Discussion board. Some people are very generous with donations and some send what they can. What do you do in the fight against RLS? Tell me about it.

Many people are barely hanging on and getting through the day (and night) takes everything they have. Some people volunteer for clinical trials that just might help find new medications or get us closer to a cure. As sufferers, we come from all spectrums and walks of life. How do you get along? Tell me about it.

There are also many people who suffer with RLS who do nothing. The people I am talking about could do something but choose not to. They are often quick to complain about the lack of medications, qualified doctors, not enough research, education, support...but do nothing to help these come about. I could be wrong. If I am, tell me about it.

RLS Awareness month comes every year. Every year is another opportunity to bring awareness to people who suffer but maybe don't know what they suffer with. It brings an opportunity to help educate and support all of us; sufferers, doctors, family and friends, the media and the world. So why do we wait for someone else to do something? Who is ultimately responsible for our well-being? There are people out there who truly cannot do anything but hang on. I do what I can in this fight not only for me and my family but for them. If this blog made you uncomfortable, then look again at your situation and see what you can do to help. If you have comments about what I wrote, tell me about it.

**The statements and opinions here are solely my own and I take full responsibilty for them**

Moon and Stars
Kathy

Really Good News

I just have to take this opportunity to commend the WED/RLS Foundation for the tremendous work they do on our behalf. This is truly good news to pass along!! They have been working with the Minnesota Evidence-Based Practice Center (EPC) which is a part of the federal Agency for Healthcare Research and Quality (AHRQ) on a new report for treatment of WED/RLS.

It seems that someone has finally seen the need for treatment information for WED/RLS. The AHRQ (www.ahrq.gov) is that someone. As patients, we have long known the need for treatment information. If we don't have the best possible information, how can we make a decision on what is best for us? The AHRQ strives to provide the best and most objective information for us as patients and for our health-care providers. Through this report, we will have better information on what treatments might work best for us.

We all know that WED/RLS is capricious. What works for one may not work for another. That is one major reason that treatment options are so hard to decide on. But by coordinating all available information, we have a better chance of getting the help we need. The AHRQ looks at things such as clinical trials and studies, effectiveness of treatments, any harm that might come from treatments, and the characteristics of patients (such as age, gender, race and disease severity).

The AHRQ is also looking at how treatments for WED/RLS might also improve sleep quality and quality of life. AT LAST!! How long have we agonized over the fact that we not only do we not sleep at night, but that our entire quality of life is affected?

We seldom see just all the areas that the WED/RLS Foundation is involved in. Many times they have been accused of not doing anything or certainly not enough for us as patients. This proves that they work diligently on our behalf, all the time. It may take time for all this to come together but the Foundation will stay with it until the end. In the meantime, they will not stop looking for more ways to improve treatments, quality of life and eventually find a cure.

Please check out the AHRQ website (www.arhq.gov) to see what this federal organization is all about. And take the time to thank the Foundation. They deserve it.

Moon and Stars,
Kathy

My Wish List

If you had two minutes to tell someone anything you wanted to about having RLS/WED, who would you tell and what would it be? Remember, you only have two minutes.

Who, Me?

I'm on facebook quite a bit, reading the posts people write about RLS/WED. I answer when I think I might be able to help. I also check out the discussion board on the RLS/WED Foundation website, as often as I can. I get phone calls and emails from people who suffer with this disease. All are looking for help; medications don't work, doctors can't be found who understand, family and friends just don't get it. I wish I had the magic answer for everyone because I really do understand how they feel. I've had RLS/WED most of my life and although it is mostly under control, there are time like tonight when it is truly miserable.

Most of the people I "talk" to are in the early stages of finding out what they have and trying to find relief. Others have had this for years and are barely hanging on. Still others are fighting back in whatever ways they have. The first two groups can only think about survival at this point. The last group, while having just as many problems, are actively taking a stand in the RLS/WED arena.

I am not condemning anyone here; each person has to do whatever it takes to get through the day (or night). What I am doing is pointing out that the people who are active in this fight seem to handle it all better. They seem to have more optimism, more spirit, more....SOMETHING! Maybe its just that they feel they have more control over a disease that wants to take over our lives.

Before I get bombarded with replies from the first two groups (that would actually be a good thing!), let me explain what I see. People who are actively involved in working towards better lives and a cure do so in many ways. Many donate frequently to the Foundation so that the Foundation can continue the work we cannot do ourselves. Many are support group leaders and advocates. Many watch the media and write responses to the mainline idiots out there, trying to set the record straight. We have patient representatives meeting with the FDA to let them know how important new medications are. We have people who try to help others on facebook and the discussion board. But way too many wait for others to do the work and complain when results don't come as fast as needed.

You may not be able financially to donate much. But if you really want to, you could find $5 occasionally to send. You can write letters to the editors of your local newspaper or ask the Foundation for a general info letter that you can send. You can support others on facebook or the discussion board. But the most important thing you can do is educate yourself about the disease that is running your life. Make sure your information is correct and up-to-date at all times. Pass that information on to others when you can, especially if that person is your doctor, a friend or family member. Learning all you can about RLS/WED is the most important thing you can do and it doesn't cost a thing. Except maybe some time. At 2:00 a.m. when you are walking the floor, read a book about RLS or go on-line. If you need to walk a few minutes between pages or sites, go ahead. If you get just one tiny bit of information during that time, then RLS didn't steal another night away from you. Will you still have RLS/WED? Of course. Will you be gaining some control over it? You bet and that helps--knowing that you are doing something.

Moon and stars,
Kathy