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'Spilling a glass of water on my leg causes unbearable pain': Highbury teenager speaks out on rare condition

PUBLISHED: 15:27 20 September 2016 | UPDATED: 15:50 20 September 2016

Helena Stone: raising awareness of complex regional pain syndrome

Helena Stone: raising awareness of complex regional pain syndrome

Archant

Imagine having a condition that leaves you in constant pain. It's time to talk complex regional pain syndrome, Helena Stone tells James Morris.

“Brave” is one of those words lazily over-used by local papers to describe someone in plight.

But the Gazette has no such problem using it for Highbury teenager Helena Stone.

She suffers complex regional pain syndrome (CRPS) in her right leg.

It means if someone spills a glass of water on it, or gives it the slightest knock, Helena is left in agonising pain.

Diagnosed two years ago, this debilitating illness has caused untold heartbreak.

Helena was one of the best young kayakers in the country, but has been forced to quit. She was at Loughborough University, but had to pause her studies as she was left wheelchair-bound.

Little is known about CRPS, which is why Helena, 19, of Calabria Road, is speaking out.

“I loved kayaking,” she says. “I was 16 and training for a national rankings race – I was in the third tier. I capsized and sprained my knee. A year later, it was still swollen. That was when I was diagnosed. They didn’t know what caused it, and that is the big issue.

“I am constantly in pain, but it varies from day to day. Some days, spilling water or the slightest knock can cause me unbearable pain. It can leave me in tears.

“I got through my A-levels but this year my condition got worse. I was at Loughborough but had to pull out. I was a really active 16-year-old. Now I’m reliant on a wheelchair and dealing with doctor appointments.

“I have an uncertain future because there’s a big lack of understanding on CRPS. Treatments are very hit and miss. I have had 11 but my body responds differently to each one. I can only hope they find something that works.”

Which is why Helena, who returns to university in February, is blogging about her experiences.

“CRPS is an invisible disability. My blog is not about finding a cure, but about raising awareness that not every disability is visible. And hopefully I can support those going through the same as me.”

Read Helena’s blog at syndromepainregionalcomplex.blogspot.co.uk

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