RESTLESS LEGS SYNDROME FOUNDATION INC

Rating: 4.76 stars   21 reviews 807

Issues: Health

Location: DBA Willis-Ekbom Disease Foundation 1530 Greenview Dr SW Suite 210 Rochester MN 55902 USA

Mission: Willis-Ekbom disease (WED), also known as restless legs syndrome or WED/RLS, is a chronic neurological disease that affects between 7% of the world's population. The goals of the WED Foundation are: 1) to inform the general public about the disease, 2) assist patients and their families to understand WED/RLS, 3) alert healthcare professionals to recognize WED/RLS and prescribe proper treatment, and 4) advance research on WED/RLS.
Geographic areas served: U.S. & Canada
2013 Top-Rated Nonprofit
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EIN 56-1784846
507-287-6465
http://www.willis-ekbom.org
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

It was so comforting to find an organization that totally understand restless leg syndrome and the affect it can have on one's life. Sleep depreivation is serious. I've learned about side effects of medications used to treat the disease, that it is genetics, that there are things one can do from a nutritional and supplemental aspect to help. They have now established quality centers. The webinars are very educational. They've giving me hope. This is such a stupid and silly disease. People have a very difficult time understanding it if they have never been affected. This organization is awesome.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I have mobility issues, and if given the choice to be able to run and dance OR be rid of WED/RLS, it would be a hard choice. This wonderful foundation has done MAJOR things for the mere 7% of us who are misunderstood sleep & relaxation deprived victims. Without the foundation we would also lack knowledge & any relief. Few doctors are knowledgeable, we must self advocate. Now the foundation has several centers and I will be travelling to Baltimore soon to see Dr. Earley. The meds for this disease tend to augment or lose effectiveness, so treatment is ongoing. A big plus is that Dr. Earley will treat & prescribe online. I am hopeful for myself and my son who is 37 years old and already experiencing symptoms which deprive him of sleep.

If I had to make changes to this organization, I would...

None that I'm aware of

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

Awake and walking the floor one midnight sometime in the 80's, I turned to my new go-to resource - the internet -- and started punching in what I was experiencing: "jumpy legs" (my grandmother's phrase), wiggly legs, legs can't sleep... This inexpert search led me, even in those days of complicated algorithms, to the Restless Legs Syndrome Foundation. That was a watershed moment.

I've been a member ever since. The foundation has always been at the cutting edge of research into what we now know as Willis-Ekbom Disease (WED). More immediately, the Foundation-sponsored programs - Support Groups, Online Sharing Community, eagerly awaited monthly newsletter "Nightwalker" -- have been important means to a life-well-lived.

Key phrases of the Foundation -- "You are not alone" and "In search of a good night's sleep" and "Until there is a cure" are description, uplifting, hopeful. One cannot find anywhere another organization uniquely devoted to this disease. I support it with all my heart.

If I had to make changes to this organization, I would...

find a celebrity spokesperson!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I began experiencing WED/RLS at about age four. My father had the disease as an adult and both my children are now experiencing symptoms in their 20's. I am currently 59 years of age and would describe my symptoms as extremely severe. I use to be able to control symptoms with regular exercise.
As I aged and had three pregnancies my symptoms continued to worsen. During my middle thirties my symptoms increased causing severe sleep deprivation. I was married, raising children and working as a nurse. Despite exhaustion I did manage to function at a fairly high level. I had over the years sought lots of medical assistance from doctors whom would look at me like I was crazy when I would describe the symptoms. I literally could find no help. As my sleep deprivation worsened I became depressed and was treated with antidepressants which helped my mood and possibly improved my sleep a bit.

I believe in the late 1990's I saw a commercial for Mirapex which described my symptoms completely. I was so excited and made an appointment with a sleep specialist who did prescribe Mirapex for me. For about 2 years it was a miracle drug for me. I was getting major relief from my WED symptoms. However as time progressed I needed to continually increase the dose. I developed compulsive gambling which I had no idea was related to the Mirapex. I had never enjoyed gambling previously and was completely thrown by this compulsion. I attended Gamblers Anonymous, never carried cash, tried many things and was unable to control the gambling. My gambling was rightly fully so causing severe marital issues . It was on a commercial for Mirapex that we saw compulsive gambling as a possible side effect. We made an appointment with my sleep specialist, he stopped the Mirapex cold turkey and started me on a very low dose of Requip. The full onslaught of my WED symptoms returned. The Requip did not help and I was in severe pain and unable to sleep at all. Gabopentin was also of no help. Later I learned that this transition from Mirapex to Requip may have been easier if my physician had slowly reduced the Mirapex and started the Requip.

Im sought help from my Family Physician who referred me to a neurologist.
By that time my sleep deprivation was so severe that as I would pace the floors at night I would literally fall asleep standing and fall to the floor. Unfortunately the neurologist I saw was not well informed on R
WED, diagnosed me as in a manic phase of bi -polar with the WED symptoms a side effect of the mania. He prescribed Lamictal. As I understand there is a 1/ 100,000 chance of a serious reaction to Lamictal. Within 24 hours of beginning the medication I was having severe visual and as
auditory hallucinations, extreme physical agitation with continued severe WED symptom, and massively suicidal. With a bi-polar diagnosis, the neurologist and emergency room physicians did not believe that I was having this rare reaction to Lamictal. No one would listen. At one point another neurologist was called to the E.R., questioned why I was on the Lamictal and placed me on Sinemet.
I did experience some relief of symptoms with the Sinemet. A few days later when I called my neurologist for a refill of,the the Sinemet he angrily refused. At that point my husband said I needed to stop the Lamictal, basically stating ' you saw the neurologist initially as an exhausted woman and he has made you crazy. Stop the Lamictal'. I did as he suggested and so thing a few days my mind began to clear. I made an appointment with the neurologist I had seen in the Emergency Room. Due to my history of reactions to medications he was concerned about prescribing anything other then Sinemet, but at least I was getting some relief and was no longer feeling crazy.

I am now 6 years post Lamictal incidence. The Lamictal has caused my WED to worsen, have had definitely cognitive damage and am no longer able to work. Methadone is the only medication that now relieves the pain of WED, but unfortunately causes severe debilitating depression. Without the Methadone, the electric voltage type pain, need to be aggressively moving at all times 24 hours a day and the inability to sleep makes my life unlivable. The Methadone increases my depression to such a severe level that 50% of my days, all I want to do is die. I know it is the Methadone because when I stopped taking it and used Oxycodone my mood improved significantly. Unfortunately the dose I need to control the pain is higher then my neurologist is comfortable in prescribing. Therefore I had to return to the Methadone.

WED truly controls my entire life. I am no longer able to work at a job I truly loved, have lost friends because the depression can make it too difficult to socialize at a normal level, my husband and I can not do the things we hoped to do at this point in our lives, and everyday is a struggle for me.

The WED Foundation has truly been a life saver for me. The information, support from administration and the ability to read others stories has as I repeat a life saver. I so not say that lightly. It truly has stopped me from injuring myself and has at times given me reason to hope.

Thank you.

If I had to make changes to this organization, I would...

I really have no probably doable suggestions . I would love a support moderator led support group for people like myself who suffer so greatly. The Webinar's are wonderful, the more the better. It would be nice to be able to hear the Webinar's repeated/ by recording if you are unable to attend the the first one. It would also be nice to have an Internet availability to ASK THE DOCTOR, ASK THE PHARMACIST.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

I am almost 75; my first extreme episode of RLS occured about 7 months into my first pregnancy, at the age of 22. Although my grandmother and my mother both had what they called "the heebie-jeebies", I did not associate my symptoms with them. Much like another reviewer mentioned, a small blip in Modern Maturity (AARP magazine) in the early '90's finally gave a name to what I had suffered continually with for over 30 years! By then, I had discovered by trial and error that limiting caffeine and sugar, and regular exercise helped the symptoms, but spent untold hours watching TV or reading on the floor because I could not sit. Traveling became miserable; my husband finally moved into the guest room because I kept him awake due to getting up several times a night to do leg exercises on the floor, or to take a hot bath.

After learning that my misery actually had a name, and getting my first computer, I found the RLS website, with its interactive forum. Shortly thereafter, I also found a neurologist at a nearby teaching hospital who was beginning to treat patients like me. Fortunately, I had learned that some pain meds greatly relieved the symptoms, and he was willing to prescribe low doses for my worst nights.
Then, along came all the research showing that Requip and other DAs were also effective for many RLSers.

For the last 10 years or so, I have been able to combine a low dose of ropinerole at night, with a low dose of different types of pain meds mid-afternoon (I alternate periodically to lessen the chance of addiction and rebound). Most nights, I sleep 7-8 hours, with only occasional break-throughs. I do often have early morning fatigue, which my doctor says is probably caused by the ropinerole, but a small price to pay for sleep! Of course, I still exercise, use very little sugar and caffeine (especially after noontime), and hot baths are my go-to if I forget to take my meds on time.

Thank you, WED Foundation, for keeping us up to date with helpful information, and most of all, for the continuing research. I have often remarked that everyone should have to spend one night with severe RLS, without medication.........then we wouldn't have to have so many conversations with others about what living with it is like!

If I had to make changes to this organization, I would...

Find a way to reinstate the lively forums that you sponsored years ago, where RLSers could more easily share stories about their symptoms, and ways to cope. There are still many doctors who are skeptical about WED, in spite of all the efforts of the Foundation.

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I have been a volunteer with RLS/WED since 1994. Why did I start and why do I continue? It is because this condition can be extremely disruptive to one's life and can rob victims of years of joy. The pain, confusion, health risks, and depression are magnified by misunderstanding, confusion about diagnostics and treatment, and jokes based on ignorance.

Above all, those of us with RLS/WED need a reliable source of information, including an organization you can trust to debunk quackery. We are fortunate and I am grateful that we have such an organization in RLS/WED which continues to grow and evolve to serve our community better.

Consider joining, or using, or offering your story to help others, because it is a tough condition.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

My experience with RLS/WED started with my mum more than 20 years ago. She had restless legs for a few years but seemed to manage it at first, but then 17 years ago she developed chronic renal failure and her symptoms got gradually worse. About 3 years into her renal illness her RLS got so bad that she started walking the floor nearly every night, but the doctors told her it was all in her head and there was nothing they could do for her.
Eventually at one point she was admitted to a psychiatric hospital because she couldn't bear it any longer, she had at this point went about a week without sleep. After being in the hospital she fell into a coma which she stayed in for 3 days. It was her body just collapsing with sheer exhaustion.
Us, her family didn't understand and believed the doctors that it was all in her head, so as a result didn't have the sympathy for her that we should have.
Sadly my mum passed away 14 years ago from her renal failure.
About a year after this I myself started having symptoms like my mum, I was devastated that every time I went to the doctor I was looked at like my mum was, like here we go again.
I was referred to a neurologist whom I was under for 10 years, and in this 10 years I had every test under the sun, ct scans, MRI scans, the lot. After the 10 years, by which time my symptoms had become so severe that I was the one walking the floor every night, and this is when I realised just how much torture my mum had been in.
My last appointment with that neurologist sighed and said nonchalantly "well we have came to the end of the road" I asked what she meant by this, and she said, we have tried every test I can think of and have found nothing wrong with you.
I was devistated and just broke down and said I couldn't suffer like this any longer and was contemplating suiside.
She panicked then and said the only thing she could do for me was to refer me to another neurologist, of course I jumped at the chance, but was told this could take some months, I didn't care I just needed to know what was wrong with me, as my symptoms were so severe that I couldn't sleep at night at all, and only slept when my body was just totally and utterly exhausted,
In the United Kingdom there is a rule that if you don't see a specialist within 9 months of a referral, by law you must then be referred to a private practice.
This happened to me, and when I finally got the appointment with a consultant I fully expected him to tell me what the previous neurologist told me.
You can imagine my astonishment when, within 5 minutes of describing my symptoms, he said "I know what's wrong with you" I was stunned, and scared when I asked him what it was. He said you have a thing called RLS, of course I had never heard of this, so he explained all the symptoms to me.
I was stunned as he was describing me to a T.
He said I was lucky as there was a RLS specialist in Scotland where I am and he referred me to him.
I came out the hospital that day with so many emotions, but the main one was relief, that finally it was confirmed there was something wrong with me. ( how sad is that) and second there was a doctor who could try and help me.
That was over 2 years ago now, and it has been explained that there is no cure, or even any way to test for it, and that different medication works for different patients, sadly because my symptoms are so severe it is difficult to get my medication right, but at least I have someone who knows that I have a real disease and totally understand what I am going through.
Hopefully he will get my medication right soon. I am due to start a new medication this week, so fingers crossed that this is the one.
I have learned 2 things from my experience
1. I had to educate my own GP on the subject who has since read up on it himself so hopefully he will recognise the symptoms for the next sufferer who goes to see him. And most importand of all, for him to educate the other doctors at the surgery, and maybe it will roll out to their doctor friends.
2. My biggest regret is that I never got to tell my mum that I understand what she went through and gave her the sympathy she so badly deserved. I wish I could just get a few minutes back with her to tell her this, I would do anything for that.
So the best I can do is spread the word to anyone who will listen. And I have managed to persuade someone from the USA who are having a support meeting with speakers who are experts in this field, and also fellow sufferers and they will have a Q & A session, they are going to film it and publish it on this website and hopefully if everything goes well on Sunday they will in the future have live feeds through social media etc.
This I hope can happen as it can help so many people, if it helps just one person or helps undiagnosed people to see it, then I will feel like I have done something very productive and will continue the fight for this disease to be recognised not only by sufferers but most importantly by medical profession to recognise symptoms way sooner than it took for me to get diagnosed

If I had to make changes to this organization, I would...

Make it so that people can visually see any seminars or meetings through social media or any other media to countries who still don't recognise this as a disease, so that people can be diagnosed way sooner than years like me

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Board Member
Rating: 4 stars  

1 person found this review helpful

As a former member of the BOD at the Foundation for 6 years, it was gratifying to see how this organization works tirelessly to advocate for public awareness and individual support for those in extreme need.
I feel that educating the public and the medical community is something that the Foundation does very well. The new updated website allows individuals the opportunity to access current information regarding this disease. It is so important to support the Foundation so that the continued research will give hope to those who have not been helped by the current medications.
It was a very rewarding experience to be on the BOD, and I would highly recommend that you give of yourself to help those who are so desperate.

Will you volunteer or donate to this organization beyond what is required of board members?

Likely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

A lifetime of agony. Dr's visits at very young age. He's "just fidgety or hyperactive" were the comments. How else at such a young age of 8 yrs old do I explain this to anyone. Fatigued each and every day of my life from little sleep. Old enough to understand the effects of drug and alcohol; I seek to medicate myself with disastrous results.God, I plead, what is wrong with me?! THANK GOD FOR THIS ORGANIZATION! Someone knows and understands what was going on all along!

If I had to make changes to this organization, I would...

Too new a member to critique my new found lifeline! Maybe later I'll have some great ideas. But for now, I wouldn't change a thing!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Role: Board Member
Rating: 5 stars  


I can't help but wonder where I would be today had I not found the WED/RLS Foundation when I did. I was suffering from uncontrollable and severe leg 'symptoms' that were getting progressively worse and controlled only with strong narcotics. Where would that have led me ??? At that time, I didn't even have a name for what was happening to me nor could I find a doctor any wiser. And then I heard about THIS FOUNDATION !!! The Foundation was still pretty new at that time (1990's) and their information compared with today was pretty sketchy. However it was also evident t that I was not alone and others were not only volunteering their time to help search for answers but willing to share what they had learned. Importantly, I found some relief from this miserable condition.
I'm a strong believer in 'giving back' and I decided to try to help in any way I could so others would have an easier time.

As a result I sat on the Board for six years, have volunteered for our local Support Group and am on the Canadian WED/RLS board. I've specifically targeted the medical community and my particular interest is in our 'aging population' (since I am one!) and the multiple problems this disease can exacerbate.

Without the direction of the Foundation none of this would have been possible. I owe a great debt .
Much is left to be done. I hope others with this condition will help us continue to find answers. We can always use your help.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful?