• All patient respondents identified themselves as having been diagnosed with RLS/WED, either by a physician or through self-diagnosis, with the majority reporting diagnosis between 30-70 years of age (84%).
• Almost one-third (35%) were diagnosed by a primary care physician, while another 39% were diagnosed by a neurologist and/or sleep specialist. 
• Eighty-three percent (83%) started taking medication between the ages of 30 and 70, despite the fact that almost half (45%) began experiencing symptoms before age 30. 
• Ninety-five percent (95%) of patients indicated they have taken prescription medication for their RLS/WED; of these patients, 97% were currently on prescription medication.
• 73% of patients report experiencing their RLS/WED symptoms on a daily basis.
• Sixty-one percent (61%) of patients report that their symptoms typically start in the afternoon or evening; however, 20% also report that the time that their symptoms start varies from day to day. 
• In addition to prescription treatments, patients also reported taking iron supplements (43%), natural remedies (25%) and over-the-counter sleep aids (21%).

• Only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s).
• About one-third (31%) of patients have switched medications three or more times since diagnosis.
• Almost one-quarter (23%) of patients have tried five or more medications to treat their symptoms.
• Patients reported lack of nighttime symptom control (46%), symptoms reappearing or getting worse after several months or years using a medication (33%), lack of daytime symptom control (24%) and experiencing unwanted side effects (23%) as the most common reasons for changing medication in the past.
• Ninety-three percent (93%) of patients “agreed” that they wished more effective medications were available to treat RLS/WED.
• Half (50%) report that they have been suffering with RLS/WED for a long time and nothing seems to work/adequately control their symptoms.

• More than two-thirds (68%) of patients reported that they have experienced the side effect of augmentation (defined as a worsening of RLS/WED symptoms that occur after starting a prescription medication to treat RLS/WED. Particularly, symptoms may occur earlier in the day, spread to body parts other than the legs, be more intense, and/or begin after a shorter period of rest of inactivity than before treatment).
• Sixty percent (60%) reported the side effect of augmentation to their physician, leading roughly one-third (32%) of patients to discontinue treatment and start a new medication while another 16% report that the dose or frequency of their medication was increased.
• A little less than one quarter (22%) of patients have experienced withdrawal symptoms while discontinuing treatment.

• Sixty-eight percent (68%) of patients “strongly agree” that there needs to be greater physician knowledge and understanding of RLS/WED.
• Forty-two percent (42%) “agree” that their health care provider does not understand their disease.
• About three-quarters (76%) “agree” that their doctor has prescribed the medication that is right for them.

Donna's Story

I've suffered from WED/RLS my entire life - since I was a child.

I was always being told to sit still, which of course I couldn't do. I'm 63 years old now, but when I was about 50 I finally couldn't take it anymore and my general practitioner referred me to a neurologist for treatment.

I was going for several days without sleep. My condition was affecting my job performance and home life. The neurologist started me on Requip and almost immediately I was getting 7-8 hours of restful sleep a night for the first time in as long as I could remember. However with increased dosages the Requip, the medication soon started losing its ability to relieve my symptoms. My doctor soon switched to Mixapex. I started with low doses, then progressed to Mixapex ER 1.5.

I was still experiencing what I refer to as breakthroughs (sleep) during the night so we added another .5 to 1.0 mg at night. This helped most nights, but I soon could not find any relief during, and right after a full moon. I also find that drastic changes in atmospheric pressure changes impact my WED/RLS. I’ve tracked/documented these symptoms. In some cases, I’ve gone up to 5 days without any sleep.

I should also mention that my maternal aunt and paternal grandmother suffered from WED/RLS as well. This condition causes depression, sleep deprivation, confusion, and all around irritability. I should also mention that twice during major surgery and recovery I have woke up while under anesthesia due to the WED/RLS severity.

I hope that this will assist you in your research.

Growing Pains

Last Tuesday, October 1st I had surgery on my left foot. I was given a mild sedative to make me sleepy and a local was used on the foot. After the surgery had begun the WED/RLS started and prevented the surgeon from proceeding until he could quiet the leg. After the procedure was complete and I went home, the WED/RLS came back and I was instructed to keep my leg elevated and an ice pack on my foot. That was impossible even after I took a pain pill to help quiet the leg. I was miserable all afternoon. This situation has happened twice before.  First when I was having a cataract done and second when I was admitted to the emergency room of a hospital for food poisoning picked up in a restaurant. In neither situation did they know how to handle the problem. On the third visit, we knew it was possible, but the problem after I came home in the afternoon was new and we just couldn’t turn off the WED/RLS.  I have told the doctors of the whole situation and I think we will be prepared if the situation ever arises again. The pain is finally gone from my foot – OH happy day.

• Recognition as leaders in the provision of comprehensive, high-quality care for WED/RLS on the Foundation’s website and other materials
• Recognition as a resource to primary care practices and regional support groups
• Annual WED Foundation-sponsored research meeting for WED/RLS Quality Care Centers (begins 2014)
• Opportunities to participate in care quality projects and apply for designated research funds  

Growing Pains

I was raised to regard family as truly important. When I was growing up we always spent Sunday at Grandma’s house visiting with aunts, uncles and assorted cousins. When someone asked how you were, they really wanted to know. I had horrible “growing pains” when I was little and I remember my Aunt Virginia massaging my legs with rubbing alcohol. I remember she kept it up for a long time and it did eventually help. This same aunt asked me last weekend if I was still having “trouble” with my legs. She knows there is a medical name for it but doesn’t remember what it is; she just knows I’ve had it for a long time.

Two of our daughters also had “growing pains” in their teens. The doctors went into a long explanation about bones outgrowing muscles and that they would soon go away. Somehow I didn’t link my daughters’ pains with the ones I had growing up. I was just learning about Willis-Ekbom disease, also known as restless legs syndrome or WED/RLS, and the connection between it and growing pains wasn’t apparent then. So they suffered and complained, just as I had. The pains did go away but just like with me, they were replaced with something worse.

I’ve only known that I have WED/RLS for the past 20 years or so. That seems like a long time but we all know that reliable information and medications that really work has NOT been available until fairly recently. I have tried many, many different medications (that did not work) and many more doctors (that also did not work). But I have suffered with this for most of my life. I also know now that my WED/RLS is hereditary. The day I realized that I was probably passing this on to my daughters was a truly horrible one. Not only is the disease horrible, but we are still having to deal with doctors who don’t care or who aren’t qualified to help, family and friends who don’t understand, and a lack of medications to choose from.

We have been blessed with three daughters who are strong, intelligent women. We have two beautiful grand-daughters with another due shortly. I am determined that although I may have passed this on to them, they will never suffer as I have. All the help I can give to the WED Foundation or to others by fundraising, sending donations, monitoring Facebook, being a support group leader, or just talking to others about it will also help my family. They may still suffer with the symptoms of WED/RLS but they will be educated about it and know what control they can have over it. They will have family that knows what they are going through and will stand by them with whatever help they can give. My aunt did that years ago when this didn’t even have a name that we knew of. All she knew was that she could help a little in stopping the pain. My goal is the same; I just have a little more at stake in it now.

• Recognition of UTHealth as a specialty center in treating WED/RLS patients with a range of complexities and co morbidities;
• Availability of UTHealth QCC staff as information and referral resources for referring primary care providers
• Better understanding of the disease process and the patient’s role in care management through educational offerings, print materials, and connections with WED Foundation local support groups

To better serve its members, the Foundation will maintain a directory of healthcare providers who have expressed interest and/or knowledge in the treatment of WED/RLS by being certified as WED/RLS Quality Care Center provider.

We are proud to announce our second certified WED/RLS Quality Care Center!

Appointment Scheduling Information:

Certified Healthcare Providers for Mayo Clinic include:

• Bradley F. Boeve, M.D.
• Suresh Kotagal, M.D.
• Mithri Junna, M.D.
• Melissa C. Lipford, M.D.
• Michael H. Silber, M.B.Ch.B.
• Erik K. St. Louis, M.D.
• Maja Tippmann-Peikert, M.D.

You can search for other Quality Care Centers on the Foundation's website.

• Help patients and families locate specialists with WED/RLS expertise
• Establish centers as regional resources for primary care providers
• Promote understanding of the disease process and the patient’s role in care management through educational offerings, print materials, and connections with WED Foundation local support groups
• Improve care over time through quality improvement projects

Youth Initiative

Willis-Ekbom disease (WED), also known as restless legs syndrome or RLS, doesn't only affect adults. As this neurological condition has a genetic component, it can be hereditary. Some symptoms may arise early in life. It is on behalf of the youth living with WED/RLS we dedicate this this contest and the youth initiative web page.

Sarah - 10 Description of drawing: What I drew was saying that my top part of my body is relaxed and calm, but the bottom wants to run really bad.