I’m a marathon runner with Céline Dion’s rare illness — I can barely walk now

A five-time marathon runner from England said he can “barely walk” after being diagnosed with the same rare illness as Céline Dion.

Jon Kelf, 54, said he used to love running, but now he struggles to do so much as walk with stiff person syndrome.

The incredibly rare neurological condition is a progressive disorder that causes the body and limbs to stiffen, often triggered by emotional stress or noise.

“When I was diagnosed, I could barely move at all,” Kelf told South West News Service. “All I could think of were worst-case scenarios.”

The physically active electrical engineer said he had completed five marathons between 2002 and 2012 until one day his legs suddenly gave out on him. According to the Cleveland Clinic, symptoms of SPS can include painful muscle spasms and muscle stiffness.

“I couldn’t be left alone as I couldn’t do things safely, from preparing food to getting up and down the stairs,” Kelf said.

Kelf recalled learning of his diagnosis in 2019 while recovering from an operation to remove a tumor in his chest. He said he started feeling his legs tighten up and stiffen when nervous or tense, but ignored the feeling — until one day it got so bad he stood up and couldn’t move his legs.

He reported falling right to the ground, ending up with a cut on his head that landed him in emergency room. After two more trips to the ER, Kelf underwent testing.

Dion, 54, announced her SPS diagnosis in an Instagram video in December. In the emotional clip, she blamed the disorder for the postponement or cancellation of several concert dates.

Kelf is grateful for Dion’s announcement, as he believes it will bring awareness to this rare condition, which affects one or two people in a million, according to Johns Hopkins Medicine.

“When Céline came out with her diagnosis she was quite emotional about it, and I was emotional seeing it,” Kelf said. “People are going to know about it now for the first time. Most are oblivious and don’t realize the extent it can change your life.”

And it has changed Kelf’s life. He said he still experiences daily symptoms. The spasms are only partially helped by anti-anxiety and muscle relaxant Diazepam, he added.

The former marathoner now avoids going anywhere with too many people or concrete that could become a fall risk.

Since being diagnosed, Kelf has taken solace in his new hobby: wildlife photography.

“Physically I can’t do certain things anymore, but to get out with my camera makes me happy, which is all that matters,” Kelf said.