Published: 23/08/2018 Tags: Ehlers-Danlos in the News

I cycled 5000 miles round Britain for Ehlers-Danlos

by Natalie Wilson. Originally posted on Metro UK on 22 Aug 2018

I’ve always had Ehlers–Danlos Syndrome, a rare inherited condition that affects connective tissue. But at 19 a blockage in the back of my brain meant my condition deteriorated fast.

I went from being a student out partying all the time to not being able to walk, talk or get to the toilet. After brain surgery it still took me a good three years to leave the house, and I got very deconditioned which caused problems with my joints and muscles.

I believed that if I built up my strength I’d find life easier, but I never foresaw a time when I wouldn’t be disabled.

My husband and I purchased a recumbent trike which I began riding to go food shopping. It gave me such a feeling of independence to know I could do things for myself again.

I started doing longer rides, and then, one morning, I woke up feeling that I needed to achieve something. When you’re sick a lot of the things you always thought you could do get away from you. I have always been fascinated by our country, so I spent three months planning the trip that would take me round the entire British coastline, covering 5,000 miles in three months.

It took me a while to build up my mental strength. I was scared knowing that I wouldn’t see anyone for long stretches of the road but in the end, so many people joined me along the way.

Some just did five miles, others came in their wheelchairs. I met people as far away as the Orkney Isles who had EDS.

I was in the local newspaper and the next day I walked into a shop and the shopkeeper recognised me, saying ‘I’ve got EDS too!’ It brought the EDS community a little closer together.

Indeed, meeting people along the way was one of my highlights.

Riding a recumbent trike, people always ask questions. On one occasion, I’d had a really bad day with torrential rain and I needed some dinner.

I turned up at the village’s little pub and the landlady said they didn’t serve food, but she had some frozen chicken nuggets and chips she could cook for me.

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