A marathon runner can ‘barely walk’ after being diagnosed with the same disease as Celine Dion

    (Jon Kelf/SWNS)

(Jon Kelf/SWNS)

The super fit marathon runner can now “barely walk” after being diagnosed with Stiff Person Syndrome, the same rare condition as Celine Dion.

Last month, the Canadian singer revealed she had been diagnosed with a neurological disorder that happens once in a million.

Jon Kelf, 54, was a five-time marathon runner before being diagnosed with the same terminal illness.

The disease is a progressive condition that causes stiffening of the body and limbs, often triggered by emotional stress or noise.

Jon now has difficulty walking as his body accidentally stiffens, making it difficult to move safely without injury.

Jon, from Barton Broad, Norfolk, said: “When I was diagnosed I could barely move. The only thing that came to my mind were black scenarios.

“I couldn’t be left alone because I couldn’t safely do things from preparing food to going up and down stairs.

“When Celine presented her diagnosis, she was very touched and I was touched to see it.

“People will now know about it for the first time. Most are unaware of this and don’t realize how much it can change your life.

“She certainly took notice of a strange disease.”

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

Celine, 54, has since had to cancel her 2023 European tour due to the disease, which affects one or two people in a million.

Jon, an electrical engineer, used to love to run and completed five marathons between 2002 and 2012, until one day he couldn’t move his legs.

He was recovering from surgery to remove a tumor in his chest in 2019 when he began to feel his legs tighten and stiffen when he was nervous or tense.

He dismissed these sensations until one day he got up and could not move his legs.

His legs locked and he fell flat to the floor of his house, tipping over in the process. Jon ended up in the emergency room with a nasty cut to his head.

After two more visits to the ER, he spent 11 days in the hospital undergoing tests, including a painful lumbar puncture procedure during spasms.

Since his diagnosis, Jon wants others to understand the disorder after colleagues unknowingly caused it.

He said: “When I was first diagnosed I went back to work in a wheelchair with my partner who works at the same company.

“I was fired from my job, but I couldn’t be left alone.

“People thought it was funny to come up behind me and push my wheelchair, which scared me and made me symptomatic.

“I shouldn’t have been there.”

Covid-19 has become a “blessing in disguise” for him as it has allowed him and his partner, 56-year-old Dawn Bowler, to work from home.

However, the cramps are only partially relieved by the anxiolytic and muscle relaxant diazepam, and he continues to experience daily symptoms.

He said: “Due to the lockdown, I was able to work where I was familiar.

“You have to be careful how you approach life and avoid situations that cause problems.”

Jon now avoids places with too many people or concrete that could pose a fall risk.

While he is unable to completely avoid stress or walking through crowded streets, he finds that his hobby of photographing wildlife helps a lot with his symptoms.

He said: “I always come back from a trip to Norfolk Broads feeling better.

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

“One day I could hardly walk across a street full of busy streets. But photography relaxes me.

“Physically, I can’t do certain things anymore, but I enjoy being out with my camera, and that’s all that matters.”

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