My Nonprofit Reviews

The Restless Legs Foundation has been life changing for me. I have suffered with RLS for 30 years and not until I found the foundation did I find a group that understood the hell I went thru on a daily basis. I suffer from refractory RLS and not being able to sleep for days on end is miserable. My RLS symptoms mainly occurred between midnight and 5am and caused me to walk for hours on end. For the most part I suffered alone and in silence. The Foundation literature helped me understand the disease and how to best cope with the symptoms. The medical research I printed off and gave to my primary care physician to help treat me. When my symptoms became unmanageable I visited an RLS Quality Care Center and the attending RLS specialist listened and with me developed a management plan. He explained I was going thru augmentation and would need to change my prescriptions. This is the first time in 25+ years that a DR understood what I was living with and explained why the treatment plan I was on was not allowing me to sleep. Over the next month he helped me change my prescriptions and I slowly finally found sleep again. My symptoms did not vanish but were reduced significantly to the point where I could sleep. With my specialists help he changed my treatment plan several times to find the best one for me.

This was 6 years ago and since then the RLS Foundation has been instrumental in changing the way RLS is diagnosed and first treated. The foundation webinars on dedicated topics (augmentation, treatment with opiates, latest research, iron and RLS, etc) are very relevant and help us suffers maintain a better way of life. The Foundation holds weekly virtual support group meetings where suffers can log in and exchange ideas, tell their story and support each other. These group meetings have been very impactful to me. Listening and telling our stories with people that truly understand assures us we are not alone and we don't have to suffer in silence. In 2021 the Foundation posted and distributed an updated algorithm from the Mayo Clinic on the Management of Restless Legs. This medical literature will help so many suffers better understand the disease and best of all help educate the medical community on the latest treatment options. The foundation is doing so much to educate us suffers and the medical community on RLS. I owe the foundation so much.

Bill Wendt
Portland, OR