A super-fit marathon runner can now ‘barely walk’ after being diagnosed with Stiff Person Syndrome, the same rare illness as Celine Dion.
Last month the Canadian singerrevealed that she had been diagnosed with the one-in-a-million neurological disorder.
Jon Kelf, 54, was a five-time marathon runner before he was diagnosed with the same incurable condition.
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.
“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.
Celine, 54, 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.
He dismissed these 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. Jon 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, Jon wants others to understand the disorder after colleagues would unknowingly trigger him.
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.
“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 become a fall risk.
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.”
