runner 'turning into a statue' after getting same diagnosis as Celine Dion

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runner 'turning into a statue' after getting same diagnosis as Celine Dion

A former super-fit marathon runner is 'turning into a statue' after being diagnosed with Stiff Person Syndrome - the same rare illness that struck down singing superstar Celine Dion.

Last month the My Heart Will Go On hitmaker broke the news that she had been diagnosed with the incredibly rare neurological disorder.

The 54-year-old music legend had fans in tears when she shared a heartbreaking video explaining why she had been forced to cancel her European tour and outlined why her life had changed.

Since her brave announcement, more people have been telling their own stories about living with the condition.

Jon Kelf, 54, was a five-time marathon runner before he was diagnosed with the same incurable disorder.

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runner 'turning into a statue' after getting same diagnosis as Celine DionJon Kelf has spoken about life after being diagnosed with Stiff Person Syndrome (Jon Kelf / SWNS)

The disease is a progressive disorder which causes the body and limbs to stiffen, often triggered by emotional stress or noise.

Jon now struggles to even walk as his body randomly stiffens making it difficult to get about safely without injury.

Jon, from Barton Broad in Norfolk, said: "When I was diagnosed I could barely move at all. All I could think of were worst-case scenarios.

"I couldn't be left alone as I couldn't do things safely, from preparing food to getting up and down the stairs.

"When Celine came out with her diagnosis she was quite emotional about it and I was emotional seeing it.

runner 'turning into a statue' after getting same diagnosis as Celine DionSinger Celine Dion spoke about her diagnosis late last year (WireImage)
runner 'turning into a statue' after getting same diagnosis as Celine DionThe disease is a progressive disorder which causes the body and limbs to stiffen (Jon Kelf / SWNS)

"People are going to know about it now for the first time. Most are oblivious and don't realise the extent it can change your life. She has certainly shone a spotlight on the strange disease."

In Celine Dion's emotional video posted on social media, she blamed the disorder as the reason she had to stop singing.

She has since had to cancel her 2023 European tour as a result of the illness which affects one or two in one million people.

Jon, an electrical engineer, had previously loved running and had completed five marathons between 2002 and 2012 until one day when he couldn't move his legs.

He was recovering from an operation to remove a tumour in his chest in 2019 when he started feeling his legs tighten up and stiffen when nervous or tense.

Disabled woman paralysed after falling from wheelchair on plane walkway diesDisabled woman paralysed after falling from wheelchair on plane walkway dies
runner 'turning into a statue' after getting same diagnosis as Celine DionHe now finds comfort in nature and photography (Jon Kelf / SWNS)

He dismissed these odd sensations until he stood up one day and couldn't move his legs.

His legs locked and he fell flat on the floor of his house, knocking himself out in the process. He ended up in A & E with a nasty cut to his head.

Two more trips to A & E later, he spent 11 days in hospital undergoing tests including an excruciating lumbar puncture procedure whilst he was spasming.

Since his diagnosis he wants others to understand the disorder after colleagues would unwittingly trigger his symptoms.

He said: "When I was first diagnosed I went back to work in a wheelchair with my partner who works in the same company. I'd been signed off work but I couldn't be left alone.

runner 'turning into a statue' after getting same diagnosis as Celine DionThe super-fit runner says his life totally changed one day in 2019 (Jon Kelf / SWNS)

"People thought it was funny to come up behind me and push my wheelchair, which freaked me out and triggered my symptoms. I shouldn't have been there."

Covid-19 became a 'blessing in disguise' for him as it enabled him and his partner, Dawn Bowler, 56, to work from home.

However the spasms are only partially helped by the anti-anxiety and muscle relaxant diazepam and he still experiences daily symptoms.

He said: "Because of lockdown I could work where I was familiar. You've got to be careful how you approach life and avoid situations which cause issues."

Jon now avoids anywhere with too many people or concrete that could present a risk to him were he to fall.

Though he's unable to completely avoid stress or walking down busy streets, he finds his symptoms are hugely helped by his hobby of wildlife photography.

He said: "I always come back from a trip out to the Norfolk Broads feeling better for it.

"My anxiety around people is similar to agoraphobia, but in a field it's ok, I won't hurt myself if I fall over.

"The other day I could hardly walk crossing a road full of busy traffic. But photography relaxes me.

"Physically I can't do certain things anymore, but to get out with my camera makes me happy, which is all that matters."

Debbie Luxon

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15.07.2024, 17:44 • Investigation