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Cycling for EB

 Ashli Barrett/Lacombe Globe

Natalie Buchanan and Steve Gibbs will cycle across the country, from Alberta to Ontario over the course of the next two months, raising awareness on EB and Debra Canada. (Photo submitted)

Natalie Buchanan and Steve Gibbs will cycle across the country, from Alberta to Ontario over the course of the next two months, raising awareness on EB and Debra Canada. (Photo submitted)

Cycling from Alberta to Ontario is no small task for the average person, much less for someone suffering from what is known as “the most painful disease you’ve never heard of.”

 

That’s the challenge Natalie Buchanan faces as she and her boyfriend, Steve Gibbs, cycle across the country to raise funds and awareness for DEBRA Canada, a non-profit that provides support for those dealing with rare skin conditions, and Epidermolysis bullosa (EB) - a condition Buchanan herself has.

The duo departed Lacombe last Wednesday - Aug. 30 - for Sudbury, Ont. After taking an extra recovery day in Provost, Alta., they reached Unity, Sask. on Tuesday evening.

“It’s been going well. We’re about 360 kilometres in,” said Buchanan. “There’s some tough parts throughout the day but we’ve been pushing through them and the end of the day always feels great.”

EB is an inherited, lifelong blistering disorder that causes one’s skin to be as delicate and fragile as that of a butterfly’s wing. The youngest affected are known as Butterfly Children and an estimated one in 17-20,000 are affected, including about 2,000 Canadians.

Severe cases, including that of Jonathan Pitre of Russell, Ont. who has been featured on TSN, often see those affected swathed in gauze and bandages, dysfunction of limbs and deformity of appendages.

For Buchanan, who wasn’t diagnosed until she was about eight years old, it primarily affects her feet, causing painful blisters and open wounds. As such, she and her family - her mother and siblings also affected by EB - were limited in activities they could partake in growing up, taking recovery days following any activity they did do.

So when her boyfriend said he wanted to do a walking adventure out to the east coast, she had to decline.

“He was sweet enough to offer to pull me in a wagon, but I said no,” she said, laughing. “Once that idea settled, it got me thinking. I really wanted to go on a grand adventure, but I didn’t feel like I was able to.”

Still, she didn’t want to sacrifice the chance to do something out of the ordinary just because of her skin condition. Ultimately, the two settled on a bike tour, and shortly thereafter became involved with DEBRA Canada as an ambassador.

“It gave us a lot more purpose,” she said. “I am so excited to be doing my part to raise awareness...along with proving that I don’t have to hold myself back because of my EB.

“I would be overjoyed if I could inspire even on other person to do the same.”

To follow along their trip, visit their Instagram @cyclingformore.

Those interested in donating to their cause can do so through their online page, debracanada.donorpages.com/Donation2017/Cyclingformore.

-abarrett@postmedia.com 



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