Highbury woman’s leg amputated to end ‘agony’ of rare nerve condition CRPS – and now she’s dreaming of a Paralympics Games appearance
PUBLISHED: 11:35 09 September 2019 | UPDATED: 11:45 09 September 2019
A Highbury woman had her right leg amputated on Tuesday last week to escape the agony of a rare nerve condition.
Helena Stone, 22, developed complex regional pain syndrome (CRPS) after she was involved in a kayaking accident six years ago.
But, after successful surgery, she has set her sights on mastering a prosthetic leg and one day competing in the Paralympic Games.
Back in 2016, Helena, of Calibra Road, told this paper that the slightest knock to her leg or, even spilling a glass of water on it, could trigger unbearable pain. According to the NHS, the main symptom of CRPS is "pain which can sometimes be severe, continuous and debilitating", usually caused by an injury.
She was one of the brightest kayaking talents in the country until her boat capsized and she hurt her knee, leading to her CRPS diagnosis a year later.
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Helena told the Gazette: "I was in chronic nerve pain, so I always had a level of pain and discomfort. The pain could easily and quickly reach levels where I would be in agony. I struggled to live a normal life. I spent at least 80 per cent of my time in bed.
"After amputation, I woke up with no CRPS pain. I have some phantom sensations and a bit of surgical pain but it is very well controlled."
Helena can now stand up and sit in her wheelchair without being in continuous pain, which used to exhaust her. Doctors don't usually recommend surgery to treat CRPS because there's no guarantee it will be effective and surgery can lead to complications. There is no known cure. But Helena's symptoms continued to worsen and she underwent surgery at a private hospital in London to have her right leg removed from the knee down.
Helena, who's had to take a year out from her education degree at University of Gloucestershire owing to her condition, is due to start prosthetic rehab in the next few weeks and hopes to be home and walking by Christmas.
She has campaigned for CRPS to be properly recognised by the NHS and says new guidelines released last year are a sign of progress, though she believes more must be done to diagnose the condition early and support sufferers.
She told people with CRPS: "Stay strong, positive and fight for what you need. If you are thinking about amputation, please don't underestimate the magnitude of that course of action. It seems a very tempting action when in so much pain 24/7, but the risks are very real and it is not a cure. Remember its okay not to be okay, seek support and speak to people."
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