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Appears in Newsflare picks
01:36
Teen left wheelchair-bound due to painful condition dubbed "suicide disease"
A once-active teen has been left wheelchair-bound after spontaneously developing a painful condition dubbed "suicide disease"."
Izzy Clements, 14, had just started in year eight when she found herself experiencing headaches and sickness - which grew so severe she lost 10kg in two weeks.
Doctors couldn't work out what was wrong for months - then Izzy, a once-keen gymnast, dancer and horse rider, grew weaker and began suffering with leg pain.
The teen, from Leicester, had to drop out of school and ended up in a wheelchair due to the constant pain that was so severe it would even cause panic attacks.
Eventually doctors questioned if she had complex regional pain syndrome (CRPS) - dubbed the "suicide disease" as the pain has previously driven patients to attempt to take their own lives."
Committed mum Hayley Green, 38, flew Izzy out to a clinic in Majorca earlier this year to try a ketamine-based pain management treatment which isn't available for under-18s in the UK.
But after that failed too, Hayley's next plan is to raise £25k to fly Izzy to a hospital in Italy for a series of medical infusions which have been believed to 'cure' CRPS permanently.
Hayley, who quit her midwife job to become Izzy's full-time carer, said: "Izzy is willing to do anything. She was distraught when the treatment in Majorca didn't help."
"Izzy is such a positive person, she tries her hardest to fight, but she is in so much pain."
"She sees people who are paralysed in wheelchairs and she says she'd rather live like that because at least she wouldn't feel the pain."
"She says things like 'I hate my life, I don't want to be here any more' and she's on antidepressants."
"It's awful as a parent seeing her deteriorate, and you can't help your child, when before she was bubbly and full of life."
Izzy began experiencing symptoms aged 12 in September 2022, when she got headaches and random bouts of sickness which soon became permanent.
She shed over a quarter of her bodyweight in just a fortnight and doctors were originally convinced she had an eating disorder.
She was admitted to hospital on December 7 for more tests, but on December 9 she began screaming in agony due to pain in her legs.
Various tests confirmed she didn't have cancer, bone issues or trapped nerves, and doctors chalked it up to functional neurological disorder (FND), but Izzy's family were unconvinced.
Meanwhile she had to drop out of school, became permanently wheelchair-bound and began experiencing pain as well as leg swelling and cold sweats, almost 24/7.
Hayley said: "She was in hospital from December until February to keep her on a meal plan and doing physiotherapy, and doctors tried to get her to use a walking frame."
"They thought the pain was because she was inactive - but before the pain started, she could still walk around. This was totally different."
Eventually she was discharged despite not finding a solution and the family had to apply for modifications to their home including a stair lift, as Izzy was permanently in a wheelchair.
But the teen, who is deaf and communicates using lip reading and sign language, was readmitted in April with more sickness and dizziness.
She was diagnosed with mast cell activation syndrome (MCAS) and postural tachycardia syndrome (PoTS), conditions her brother Harry Clements, 16, also has.
It explained the dizziness and sickness, and then doctors mentioned that CRPS could be cause of the worsening leg pain, but they still couldn't find a way to stop it.
Hayley said: "I ended up crying and shouting to doctors, begging them to do something about the pain for Izzy."
Hayley even took Izzy on a £11k trip to Majorca for a ketamine-based pain treatment which she had read could work, but it unfortunately didn't.
And because Izzy is under the age of 18, she isn't able to access stronger pain treatments such as spinal cord stimulation, lidocaine patches and medical ketamine in the UK.
Izzy was told by UK doctors that her disability is permanent, and she would never walk again - but Hayley's research online revealed an infusion treatment available in Italy.
Hayley said: "I started looking at studies and talking to other patients, and I have seen girls her age back in school after they went into remission from CRPS."
"It's all we want for her."
"The pain has always been in Izzy's legs, but we know it can spread through the body and we don't want that to happen."
As the family begin to lose hope, Hayley has put together a fundraiser in the hope they can send Izzy to Italy for the potentially life-changing treatment.
The travel, accommodation and treatment will cost between £25k and £30k.
Hayley said: "Before this, Izzy was creative and active, she enjoyed art and sports like netball, gymnastics, dance and trampolining."
"Now she has no choice but to stay in bed all day, she can't do anything at all - and yet the condition is mostly unheard of."
"The worst part is there's nothing I can say to her to make her feel any better."
"All I can say is that we'll fight for her."
Fundraiser for Izzy's treatment: https://gofund.me/795d6cb3
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