Man with same rare condition as Celine Dion worries about her return to stage

By Tom Jeffreys

A former marathon runner who was diagnosed with the same condition as Celine Dion after dismissing his tight legs as nerves said crowds could be a "trigger" during her comeback.

Jon Kelf, 56, was a super-fit, five-time marathon runner before he was diagnosed with Stiff Person Syndrome (SPS) — an incredibly rare, incurable neurological disorder — in 2019. He can now "barely walk" and has been forced to quit his job as an electrical engineer, instead spending his time taking photos and gardening.

The disease is a progressive disorder that causes the body and limbs to stiffen, often triggered by emotional stress or noise. In Kelf’s case, the disease makes tasks as simple as climbing the stairs difficult and has prompted trips to the emergency room after falls. While many struggle with mobility issues, SPS presents a unique set of physical hurdles.

Kelf said Dion’s tour is "inspiring" to fellow sufferers of SPS, but has pleaded for the "My Heart Will Go On" singer to do more to help the community. The emotional stress and noise element is particularly debilitating, and Kelf says it was for that reason that he never expected Dion to perform again.

Kelf, from Barton Broad, Norwich, said: "I was a bit surprised. Especially when she talked about the dancing. I couldn’t dance before the diagnosis, let alone afterward. Obviously, she has the resources to get the best treatment available, but even still, it’s quite remarkable."

"Going up on stage in front of people, for most, that would be too much," he continued. "Everyone’s different, but I’m still surprised — from what I know, and others with SPS, it would limit her."

Kelf was diagnosed while recovering from an operation to remove a tumor in his chest in 2019, when he started feeling his legs tighten up and stiffen when nervous or tense. He dismissed these odd sensations until he stood up one day and couldn't move his legs. For those facing a sudden medical crisis, the emotional toll can be as heavy as the physical one.

Tests eventually revealed his diagnosis. Dion has announced 10 shows at 3-to-4-day intervals at the 40,000-capacity Paris la Défense Arena in September and October. The intervals will be crucial for Dion to pace herself, rest, and medicate between shows, according to Kelf.

"It’s challenging to live with, to say the least. You have to rearrange your entire life," Kelf said. "It’s mainly crowds, situations where it’s chaotic when my symptoms are worst, so I stay away from them. It’ll be a lot for her to do so many shows on the trot."

While Kelf is hopeful that Dion will be able to make the show work, he warned that her resilience must avoid undermining the seriousness of the disorder. Like others dealing with invisible illnesses, he worries about public perception.

"I think it could undermine how seriously people take us, other sufferers," he said. "The illness is not the same for everyone. I’m positive that she’s doing the tour... but it would be nice if more could come out of it for other sufferers."

He added: "I just want her to spread awareness about how difficult it is. It’s so rare, so there’s very little treatment available."

When Dion first announced her diagnosis, Kelf was hopeful. In January 2023, he told SWNS: "When Celine came out with her diagnosis, she was quite emotional about it, and I was emotional seeing it. She has certainly shone a spotlight on the strange disease."

Now, ahead of Dion’s tour, he’s more wary. Many patients seeking specialized care look to public figures for more than just a spotlight.

"My message to her would be to think of other sufferers. If you can do anything to help or give hope to them that would be great," Kelf said. "I felt her Netflix show was more about her, her life rather than other sufferers, so maybe she could be more helpful. I know a lot of people would appreciate that."