Published: 00:01, 14 November 2016 |
A teenager living with chronic pain is so desperate to end her daily hell she is considering paying to have her leg amputated.
Megan Cruise, of Glebe Way, Whitstable, says if doctors are unable to treat her condition, which leaves her body racked with pain, her family will start raising funds to have the operation done privately.
The 16-year-old suffers from complex regional pain syndrome (CRPS), a rare and poorly-understood disease which causes persistent and debilitating pain.
In Megan’s case, the primary issue is in her left leg, which she is unable to straighten. It has also led to widespread problems throughout her body, including her eyesight.
The Community College, Whitstable pupil now has to use either crutches or an electric wheelchair to get around and has a scribe at school to write for her due to the pain in her hands.
“The doctors are against it, but I’m considering having my leg amputated in the future if it will stop the pain,” she said.
Her problems started last November when, aged just 15, she noticed a rash all over her legs.
“Every time I stood up it happened,” she said.
“It started happening about three to four times a week. It felt like I was on fire. They were burning.
“My knee started getting really stiff from November to January and by February I couldn’t straighten it at all, it was stuck in a bent position.
“By the February I started using crutches and the rashes began to go all over my body.
"My lips started to swell up and my eyes were puffy. My elbows, wrists, my shoulders and even my spine hurt.”
But doctors were left baffled, with every test they carried out coming back clear.
It was not until six months after the first rash appeared she was eventually diagnosed with CRPS by the University College London Hospital.
The condition is usually triggered by a trauma to the body, but not in Megan’s case.
Her mum Clare, 37, a hairdresser at Partners in Herne Bay, said: “There’s no cure for it, there’s only pain medication to make her life easier. She’s given morphine, codeine and other drugs.
“She has physio every two weeks in London as she has full muscle wastage in her leg because she can’t move it very much.
“If it had been diagnosed earlier she may have been back to living as normal a life as possible, with just flare ups, but she is stage three – she’s chronic.
“I’m not blaming anyone, but early diagnosis is what’s needed with this condition so physio and other treatment can start earlier.”
Megan says the pain is so bad she is usually off school for a week a month.
Despite this, the bright youngster managed to get five Cs and four Bs in her GCSE exams and is now doing A-levels in textiles, fine art and health and social care.
But the brave teen breaks down in tears when describing the impact the condition has had on her life.
“I can go out with my friends but I can’t do the things they do. I can’t do my ice skating or the make-up course I want to do.
“I still do my make-up every morning though. My mum does my hair so I feel normal.
“I want kids and a boyfriend. Before I was in a wheelchair the boys would be after me. I haven’t had a boyfriend for over a year.”
Her mum says her daughter has been out twice this year to the Whitstable youth centre with friends who “love her to pieces”.
Clare said: “She got upset because she saw them on Snapchat talking about going out.
“Next thing I know she’s come out of her room and said ‘I’m going out’. She was nervous and I was worried but she did it.
“She doesn’t ever complain – she just gets on with it.”
Clare said doctors believe if Megan’s leg is straightened it will solve the pain problem.
But she is not confident it can be done and they have discussed the possibility of amputation.
In a recent case, 19-year-old Hannah Moore paid £5,000 to have her lower leg removed after minor surgery on an in-growing toenail triggered CRPS.
After three years of chronic pain she took the drastic action and it has transformed her life.
Megan said: “If my leg hasn’t changed, maybe a year after that I will consider having it amputated.
“The doctors are against it but I don’t know whether they will be able to straighten my leg. If they can that might solve the problem.”
Her mother added: “If it’s the best route for her we will raise the money to have it done privately.
“It’s a long way off yet and we need to concentrate on what’s happening now. She would be 18 or 19 before we start considering it.”
As part of CRPS awareness month, which runs throughout November, Megan has been raising funds for charity.
Megan and her little sister Rosie, 13, made orange bracelets and ribbon brooches to sell at school, raising £200 for the CPRS charity.
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