Case Study feature as featured in the May/June issue of The OT Magazine.
Helena Stone from Islington in London has Complex Regional Pain Syndrome (CRPS) – a condition usually triggered by an injury – which is poorly misunderstood by doctors. The skin of the affected area can become so sensitive that a mere droplet of water, a change in temperature, even a gentle breeze, can provoke intense pain.
The 21-year-old was diagnosed with CRPS just over three years ago after a kayaking accident when her foot became caught in the boat in 2013. Helena was on crutches for two weeks and expected to recover fully but her leg, including her foot, remained in persistent pain.
She was in and out hospital for most of 2014 until she was diagnosed with CRPS the next year after a follow-up steroid injection saw her knee turn bright red and swell up. Worse was to come as the pain and swelling spread to the other leg too.
Somehow, despite suffering from excruciating pain, Helena still managed to pass her A-levels and gain a place at Loughborough University in 2015. But her condition worsened and she was forced her to drop out of uni after becoming a fulltime wheelchair user.
She had limited mobility for most of 2016 and had to be helped up and down the stairs, mostly by her parents, Patricia and Graham. The Stone’s decided to have a Stiltz Home Lift installed to help Helena move from floor to floor with some degree of independence.
Unlike a traditional domestic lift, the Stiltz lift requires no hydraulics or supporting walls and is powered by a self-contained motor which plugs straight into the wall using a 13 amp socket with the lift travelling through the floor on self-supporting stilts. The Stiltz Home Lift was situated in Helena’s 14-year-old brother William’s games room downstairs, travelling directly up to her bedroom.
“It will be five years this summer since I had the kayaking accident but I just find ways of dealing with what happened to me,” she said. “I have no choice but to get on with it for now. My attitude is how can I make it possible to do what I want to do.
“The Stiltz Lift has been a life-saver as I just felt trapped. It has made the house safe again – there is no risk of me falling – and it has given me my independence back. Before I was either crawling or bottom-shuffling up and down the stairs.
“When my CRPS was really bad, I was bed bound. Sometimes I’d have to wait for either Mum or Dad to get back from work to help me downstairs. I just became reliant on whoever was around.”
Gradually, through intensive physiotherapy, pain medications and with the help of crutches, Helena is finding a way learn to live with the constant pain. At the end of 2016, she decided to give uni another shot and was accepted to study Education at the University of Gloucestershire.
After contacting her local MP Alex Chalk, who expressed an interest in Helena’s story, he has paved the way for the student to address MPs at the Houses of Parliament about the effects of CRPS in the hope funds can be provided for research into the condition.
Helena said: “The longer my CRPS goes on, the less chance I have of it going into remission. It is the most painful condition known to medicine and there is no cure. There is no money spent on research because the total number of people who are suffering from it is unknown and therefore the spend cannot be justified.
“My aim is to take every opportunity possible to raise awareness about CRPS in the hope that the NHS will invest money into research for a cure to free all CRPS sufferers of this dreadful condition.”
Find out more Stiltz Lifts at www.stiltz.co.uk