A FIVE THOUSAND mile cycle around the coast of Britain in just 91 short days would be a challenge for even the fittest of individuals. but for 29-year-old Natalie Wilson from Berkshire, it’s an even tougher challenge.

She suffers from Ehlers Danlos Syndrome, or EDS, a group of thirteen individual genetic conditions which affect the body’s connective tissues, causing pain and fatigue.

Having set off from her home town of Wokingham on February 24, Natalie cycled to Brighton, along the south coast, south west and into Wales.

5000 miles of coast, in only 91 days, and completely self supported.

On the 27 day of her extraordinary journey, the brave charity volunteer is in Milford Haven, braving the cold spring weather to bring awareness of her rare condition to our part of Wales, before she heads up north towards Aberystwyth.

Speaking to The Herald in Herbranston on Wednesday (Mar 21), Natalie, who spent the whole of January in hospital, said that the main reason for this extremely tough challenge was to raise awareness for people with EDS and other unseen disabilities, whatever kind.

“I want to tell people that it is still possible to do things, and this coast line is beautiful.”

Explaining that her tissue wasting syndrome has no treatment, she said that her cycle would also ‘help build up muscles’.

“As I cycle around the coast I am inviting people to come and join me, and ride along – even if you are in a wheelchair!

“I chose the name Zebra because I wanted to make people think that not everything is obvious. Something shaped like a horse, and something which sounds like a horse when it gallops is not necessarily a horse.

“When I first became unwell, if doctors had understood that I had EDS then they would have treatment me differently.”

Residents of Herbranston donated supplies to help Natalie on her way, and Mrs Absolon, landlady of the Taberna Inn, donated a free meal to Natalie to ensure she was well fed for the next leg of her journey.

Natalie told The Herald ‘the people here have been amazing’ as she hugged locals who had donated supplies.

Asked about the challenge of riding 5000 miles around Britain’s rugged coast, Natalie said: “This challenge is really tough, my body hurts, my leg muscles burn more than they have ever done before. I have battled all of the elements that have been thrown at me.

“I spend the majority of the time cold unless I am cycling up a steep gradient. I am tired from spending so many hours on my trike outdoors because I am slow and the miles are taking longer than expected. When I finish cycling for the day I spend hours planning, reading comments, writing my blog and trying to raise publicity.

“I haven’t been resting apart from the time I have spent asleep. As painful as all of this is, It is nothing compared to the pain I endured before and at the beginning of the diagnosis of the conditions I have. Nothing compared to the constant 8/10 headache I had for three years, and the frequent joint dislocation.”

She added: “”I am writing a daily blog, and people can follow me on my website – zebraonabike.co.uk”

You can donate to Natalie’s cause here.

About EDS

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy.

This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences.

These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.