a man with restless legs syndrome walking through rolling hills with with a blue awareness ribbon intertwined with his legs

A Year Ago, I Told the World About RLS

In 2016, after years of symptoms, I was finally diagnosed with restless legs syndrome. In 2017, I found out that there was an RLS Day on September 23rd. From that moment on, I've always thought of doing something with it.

In 2018, I made my first attempt to walk to my sister in Denmark. Unfortunately, I had to give up on the second day because of blisters, muscle aches, and I almost suffered a sunstroke. However, I did start planning for a second attempt right after that.

Turning frustration into action

After my RLS diagnosis, I found out that many people don't know this condition or have incorrect information about it. This frustrated me very much. When I got in contact with more and more people in advocacy work in 2018, I decided to do something about it. And what better way to do so than walking, something that people with RLS do a lot at night.

My plan was to hike to Denmark in 2019 to raise awareness for RLS. I presented this plan to the Dutch patient organization. They were very enthusiastic and wanted to help me. With their support and a network of international organizations, my crazy idea would grow into a great adventure.

Walking through 3 countries in 23 days

Even before I started my trip, there were already 2 newspapers that wrote an article about RLS. Many would follow. I left on the 28th of August. At the start, press and people from the local municipality were present. In 23 days, I walked through the Netherlands, Germany, and Denmark.

During my trip, some people walked with me. Some because they like walking, others because they also had RLS. There definitely were times when I could really use the company. Along the way, there was also media attention from the local press in Germany and the Netherlands. There was also a radio station that called me every week to ask how it was going and to help me raise awareness for RLS.

Completing my walk on RLS Day

After almost 4 weeks of walking and 570 kilometers, on September 23, 2019 (RLS Day), I finally arrived in the village where my sister lives with her family. My sister had organized everything. There were two classes of children with banners waiting for me, the mayor was there, someone from the Dutch patient organization, and of course my family. It was a great ending to a beautiful trip.

Raising awareness for RLS

The hike was a beautiful experience and something I will never forget. It was also successful for restless legs syndrome. The Dutch patient organization never had had so much publicity in their 20 years of existence. Articles about RLS were written in over 20 newspapers and magazines, on paper, and even more online.

A number of local TV and radio stations paid attention to my tour, before, during, and even after. I met 6 mayors, many people walked with me, and I had the chance to tell even more people about RLS. I am grateful for all the people who helped and supported me before, during, and after this great trip.

I hope to do something like this again in the future to raise more awareness for RLS. Anyone have ideas or want to join me? Share your story below.

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