Tuesday, May 3, 2011


In 1989, eight dedicated but sleep-deprived people joined together to form the Restless Legs Syndrome Foundation. Those eight people discussed their "rare" disorder with others and although they did not find relief from the suffering, they did find support in each other.

In 1989, I was more than 15 years into that same sleepless cycle that tormented them. I knew of no one else who suffered like this. Many doctors tried, and failed, to find anything to help me. I was alone.

Thankfully, the Restless Legs Syndrome Foundation was incorporated in 1992. The Foundation began to address the growing need for research and information about this little known condition. Because of their work, a tiny article in a magazine that I read in the waiting room of yet another doctor lead to the first ray of hope I had seen in years.

My story is the same as every other person who has RLS. The details may vary but under it all, we are the same. We suffer with a disorder that is seldom understood by family, friends and doctors. We fight this fight every day and somehow keep going. But because of the work of the RLS Foundation, the Board of Directors, the Medical Advisory Board and the Scientific Advisory Board things are changing. Slowly, but they are changing.

We now have three FDA approved medications for RLS. Because of the hard work of the Foundation and Boards, we are gaining awareness in the medical field. The RLS Foundation is known to be the premier place to find the most reliable information. Support Group leaders and other volunteers work long hours helping others learn how to cope and where to go for information. We have a discussion board on the RLS website and we are now on facebook.

Which brings us here. This blogsite has not seen much use in the past couple of years but I would like to try it again. Maybe it's just me, but it seems there is a need for a place of conversation that is a union of the discussion board, the website and facebook. There are several misconceptions about the Foundation and the various Boards associated with it that should be addressed. Hopefully we can have some fun too. I am new to blogging but not to the Foundation. I became a member in 1992, a support group leader a couple of years later, was on the Support Group Advisory Board and am now on the Board of Directors.

This is a long post but I wanted you to know what was happening. While this is a Foundation blog, it will still come with some of my personal opinions. I hope you will come back, read, absorb and respond.

Moon and stars,

1 comment:

Polar Bear said...

I find it amazing and wonderful to consider that the RLSF started only in 1989 with 8 people. It was my saviour when I discovered their web site and discussion board 4 years ago. The site led me to relevant information, education and treatment, and indeed the informal education of my GP with regard to ekd/rls.