Sunday, June 15, 2014

Guest Blogger: My Dad by Ali Dzienkowski

Father’s Day, like Mother’s Day, is a day that is dedicated to someone important in our lives – our dads. I think that our parents are the most influential teachers we have, and my dad is no exception. For example, from an early age, my dad has taught me things about using computers, how to hook up video game systems to the TV, and various other kinds of technology. Although I am no genius when it comes to technological things, like developing software, I know how to work with various programs, as well as how to generally troubleshoot problems (although there are still plenty of times when I ask him for help with whatever technological problems I may be facing).

When my RLS/WED first became a problem for me, my dad, like my mom, was concerned with what I was dealing with. One of the doctors I went to said that I may have something called Restless Leg Syndrome (RLS/WED), but that he didn’t now enough about it to make a diagnosis. Through extensive research on the Internet, my mom found the Restless Leg Syndrome Foundation. My dad selflessly stayed home to take care of my sister and I in order to let my mom go the national meeting in order to learn more about WED/RLS. This ultimately helped my parents find a doctor who could provide the care that I needed at the time.

My dad still cares about whatever endeavor I decide to undertake. Whether it is going to a concert or being my chauffer for the day, my dad does so much for me. I really appreciate all that my dad has done for me. Thanks for being the best dad in the world!

Learn more on our website about Children and WED/RLS at http://willis-ekbom.org/connect-with-others/youth-initiative.

Sunday, June 1, 2014

What is the WED Foundation’s Quality Care Center program?

The WED Foundation has established a program to improve treatment for people who have Willis-Ekbom disease (restless legs syndrome, or WED/RLS) through a network of WED/RLS Quality Care Centers. Centers will be recognized as leaders in the field, serve as liaisons to primary care providers and support groups, and be listed in Foundation materials so that patients and providers can use their services. 

View current Quality Care Centers for WED/RLS by clicking here.

The program will benefit WED/RLS patients and their families, through:

  • Recognition of a center or individual provider as a specialist in treating WED/RLS patients with a range of complexity and comorbidities 
  • Availability of Quality Care Centers as information and referral resources for primary care providers when treating patients with WED/RLS 
  • Listing of Quality Care Centers in Foundation materials so that people who have moderate to severe symptoms can find the care they need 
  • Better understanding of the patient and family role in quality care improvement through educational offerings and print materials 
  • Over time, global improvements in care through quality improvement projects conducted through the Quality Care Centers 
The Foundation is actively contacting providers about the opportunity to become certified as Quality Care Centers. Certification is based on criteria developed by the WED Foundation Medical Advisory Board and requires a high level of expertise and minimum number of WED/RLS patients treated.

This program reflects a fundamental belief that every person deserves effective treatment, says WED Foundation Executive Director Karla Dzienkowski. “We frequently hear from people who are suffering from lack of adequate treatment. They may have a provider who doesn’t understand their disease, or they may be taking medications but still experience breakthrough symptoms. Nobody with WED/RLS should have such a reduced quality of life. This disease can be managed, and we aim to help providers fulfill this expectation.”

Persistent challenges
Every year, the Foundation hears from thousands of men, women and parents who need help finding a knowledgeable provider, understanding their disease, or finding answers when their medications lose effectiveness.

  • Delayed diagnosis: In 2013, the medical community is still unprepared to quickly and accurately diagnose WED/RLS. Only one half of respondents in a 2012 survey of WED Foundation members reported receiving a correct diagnosis at their first doctor visit. 
  • Ineffective treatment: Treatment options (including both labeled and off-label drugs) do not provide consistent relief of symptoms. In the 2012 member survey, respondents reported using a total of 19 different medications in six different classes, illustrating just how difficult it is to treat the disease. 
Through education, sharing of best practices and quality improvement projects, the Quality Care Center program will help the WED/RLS community overcome these challenges.

Supporting high-quality care: what you can do
As a member of the WED/RLS community, your support is needed. In the upcoming year, the Foundation will ask for your help through an annual gift designated for the program, in addition your current contribution. You will receive a special communication in the coming months that outlines this opportunity and how to plan for it. Please consider budgeting a gift according to your means. Your pledge, in any amount, will be put to good work toward improving care for people living with WED/RLS.

Make a donation to the Foundation now by clicking here.

Changing the game for WED/RLS is a long-term process, says Dzienkowski. “This won’t happen overnight. Together as a community, we can make this change. Everything starts somewhere. This is the basement, the foundation we’re building. We’re all looking up with our hard hats on.”


To learn more about the Quality Care Center program, visit www.willis-ekbom.org.