Monday, October 24, 2011

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.


Donna McLellan said...

I understand your comments about the comments. I guess the reason this latest study was so negatively received by some of us is because those of us who have been "around" forever do know this is nothing new. It is good to have the validation of it again, but severe sleep deprivation linked to RLS has been linked to high blood pressure many times over that last 6 yrs or so. I guess it is frustration coming out, because, as you are, we are severely frustrated. did you see the the questionaire that was circulated in Europe o the UK/RLS support site? almost 2,000 people returned them and the results were not good. the main issue IS awareness. It says that there is such a lack of awareness in the medical profession in the UK and Europe. This should be done in the US as well, as I, and so many members of my support groups have had so much experience with having to "educate" our own doctors. It is absolutely shocking that things really have not changed that much in some areas. After seeing my fmaily doctor for over ten yrs, I was surprised when she did not know the most basic information about what the Ferritin level should be for RLSer's. She was surprised when my neurologist ordered iron infusions for me last year because she said that my Ferritin was "in the normal range". It was 12, at the lowest end of the scale. I had to explain to her that RLSer's should have a level of 50 or more. My sister, who is a nurse for the Veteran's Admin. also had to explain to the doctor in the charge that 12-15 is not "normal" or good for people wth RLS. By the way, the infusions did me no good, even after brining my Ferritin level up to 152. so, iron is not always the answer either.
So, a lot of awareness has to happen, so even if the blood prssure study was bit redundant, it does bring more awareness to the medcical professonals who may not see the older studies. But, it is perfectly reasonable, in my opinion, to expect doctors who have have RLS patients to keep up with this kind fo information. I know they are very busy and over worked, so it is up to us who have the energy to keep them informed whenever we can. It is also important to let them know that no one med works for all people,and I can personally attest to this, as I have been on every med on and off the list. It is hard to treat refractory RLS, and somehow we have t get that across to people. Just beacuse one person says "This med works wonders for me" does not mean that everyone with RLS should pin all their hopes on one med, like Horizant, the latest med. So many people were excited about that med being approved, and I have yet to talk to one person in my groups that are happy with it.
So, to sum up, there is a LOT of work to do still, and I totally agree with what you said about that.

Kathy said...

Thanks so very much for your comments, Donna. I agree that we have a lot of work to do in educating our doctors, employers, family and friends. And it is amazing that so many just do not want to be bothered to keep up with the news and research.

What I was trying to get across though, are the grants provided by the Foundation for research. When some people complain that nothing is being done, they either aren't paying attention themselves or dismiss it as unimportant to them. Things move slowly, that is the main problem. When we are miserable, nothing seems to go right and help can't come quick enough. Believe me, I know! I have felt the same many times.

I appreciate that you took the time to comment. Let's keep the lines of communication open!

Donna McLellan said...

Defintitely will keep the communication going, as we are all ultimately on the same side.

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