A dad-of-four has been left permanently hunched over due to a crippling condition that means he can’t straighten his spine.
Jonathan Johnson, 35, has been in constant agony for a year due to chronic ankylosing spondylitis, an arthritic condition that caused his spine to “fuse together.”
The ailment – which leads to excruciating ligament inflammation – has left him permanently “bent over” and unable to even lift his head up.
There is no cure for the condition and it’s not possible to reverse the damage it causes, meaning that sufferers often rely on painkillers to ease the symptoms.
Jonathan is unable to take his kids to the park and can now mostly only drink with a straw due to the constant agony.
And he has been left frustrated after life-changing surgery – canceled in January due to doctors’ strikes – has yet to be re-booked by the NHS.
He said: “If I’m out and about, bent over, people look at you and in my head, I think they’re properly staring at me.
“I’m only 35 and I’m bent in half like an old person. The pain is horrendous. I hardly sleep because of it, and I’m always tired.
“It literally feels like someone is kicking the hell out of me constantly, like someone has jumped on my back and I’m just carrying a big rock about.
“So I’m very frustrated. I do understand things happen with Covid, but the least they could do is give us a date or some clarity and respond back to us.
“The amount of times my wife has emailed, rang and left messages, she’s just totally been ignored.”
Jonathan said the lengthy delay had particularly affected his son Alfie James Johnson, eight, who has autism and needs to have a similar routine each day.
He added: “Last he knew I was going for a major operation, and obviously, he just constantly asks, ‘When is Daddy going to hospital to get sorted out.’
“It’s hard to explain to him.”
Jonathan, from Leeds, West Yorks., was diagnosed when he was 17, before later finding out he had Crohn’s disease, which irritates the digestive system.
He said the two conditions had caused each other to “flare up”, meaning he has been in and out of hospital and was signed off his job as a cleaner.
He was fitted with a stoma bag to help control their effects and reduce inflammation.
However, he said the pain in his back began to worsen last year, and he was given a referral to a specialist rheumatologist in December.
At a pre-assessment appointment, doctors outlined a plan to address his spinal deformity with a risky operation that they hoped would reduce his worst symptoms.
But after his surgery at Leeds General Infirmary was canceled in January, he said his wife Donna’s attempts to confirm a new date have so far gone unanswered.
He said: “Obviously, when you have a pre-assessment, your surgery can be happening within the next three months, up to four months.
“But literally, we just got messed about. She tried ringing them and had no responses, so she left emails and had no responses.
“There’s a high risk of paralysis [with the operation]. But I’ve said to my wife I’m not bothered. I’ve gone past caring. I’d rather be in a wheelchair.”
Dr. Magnus Harrison, Chief Medical Officer at Leeds Teaching Hospitals NHS Trust, said his teams were “working hard” to reduce waiting times.
He said: “Like other NHS organizations across the country, our services continue to be very busy.
“All patients waiting for surgery are prioritized by clinical need and we know that some people wait longer than we would like.
“Preparing for surgery is complex and so we work closely with patients and their families to make sure treatment will be effective.
“We continue to be in contact with Johnson and his family.
“Our teams are working hard to reduce waiting times for our patients and ensure that everyone receives the specialist care they need in a safe and timely way.”
Produced in association with SWNS Talker
