Bodybuilder reveals how mysterious and incurable disease shrinks his muscles overnight

Jason Sandford suffers from a degenerative disease which eats away at his leg muscles, causing his knees to dislocate nearly 20 times

A bodybuilder has told how he still pumps 100 kg of iron five times a week, despite battling a “one-in-a-million” degenerative disease that attacks the muscles in his legs and means his knees dislocate when he sneezes.

Jason wears leg braces to prevent his knees dislocating (PA Real Life/Jason Sandford)

Diagnosed in 2004 with Charcot-Marie-Tooth disease (CMT), Jason Sandford, a former bouncer and Black Belt martial artist from Ledbury, Herefordshire, sees his leg muscles waste away overnight because of the condition.

Describing how CMT – a hereditary and incurable disorder affecting the nervous system and muscles – has made his last few years a “living nightmare,” Jason, 42, who follows a high-protein diet to help maintain his remaining muscles, said: “It’s utterly horrifying and my legs are now decimated.”

Jason says he is often taunted in public for his top-heavy physique (PA Real Life/Jason Sandford)

He continued: “Quite literally overnight, the muscle in them just shrinks away. There will be a spasm the night before and then, by the morning, a significant chunk of my muscle mass will be gone.

“CMT normally affects roughly one person in every 2,500, but I’ve been told by doctors the version I have is so rare, it only affects about one in a million.”

As a result of the muscle wastage, Jason’s knees have been severely weakened and have dislocated nearly 20 times, leaving him in agony and leading to him having extensive surgery to re-secure them.

Jason at home (PA Real Life/Jason Sandford)

Jason, who uses a walking stick and has leg braces to keep his knees stable, explained: “They’re so weak that it only takes something like walking off a street curb, or even sneezing, for them to pop out.

“My legs completely bow inwards, with the knee coming out of the back of my leg.

“Every time it happens I have another operation and have to spend another three months re-learning how to walk again.”

Jason's knees are covered in thick scars from the numerous operations he has had (PA Real Life/Jason Sandford)

He continued: “I’ve lost track of the amount of times I’ve had to re-learn to walk.”

Jason now finds it hard to believe that, until late adolescence, he was “super fit,” gaining a Black Belt in karate by his mid teens.

But he had always been more flexible than others, strangely being able to roll his “monkey feet” up into a fist, which, while unusual, he had never considered to be a problem.

The warning signs that something was wrong came when, aged 20, he fell in North Ontario, in Canada where he moved for five years, dislocating his left knee so badly that it twisted all the way around to the other side of his leg.

The horrific injury was the precursor to more dislocations and, from then on, Jason’s condition deteriorated gradually, with falls becoming ever more common and his muscles slowly beginning to shrink.

But it was only in 2004, when he dislocated his right knee that his health really started to plummet.

Jason's foot following surgery for hammer toe deformity (PA Real Life/Jason Sandford)

Within the space of just three months, the disease had transformed him from a fit and healthy bodybuilder, who went for 20-mile runs and had a 2nd Dan Black Belt in karate, to a man barely able to walk.

“I went to the doctor’s and had a series of tests such as a conductivity test. Afterwards, they gave me a sheet of paper saying I had a hereditary degenerative disease called Charcot-Marie Tooth,” he said.

“I remember the nurse asking me if I had any children, which I don’t, and she said that was a good thing, because I wouldn’t be passing on the disease to anyone else.”

Since his diagnosis, Jason has dislocated his knees on 18 separate occasions, each time meaning he needed surgery to re-position the joint.

Jason on holiday at Venice beach in California (PA Real Life/Jason Sandford)

He has also had numerous operations on his feet, to correct abnormally bent hammertoes and foot deformities – another symptom of the gruelling disease.

Jason said: “I’ve now had so many general anaesthetics that I’m no longer affected in the same way and have actually woken up in the middle of operations – needing more sedation.”

He said: “I have spent years of my life now going in and out of various hospitals, but no one seems to be able to do anything that can help – they can only fix the symptoms temporarily.

“While I don’t know of anyone in my family with CMT, it is commonly found amongst Native Americans and, originally coming from Canada, I know I have some Native American blood.”

Despite all the medical attention he has received, Jason, who is single, said his particular case of CMT still continues to astonish doctors.

Jason added: “When I go and see them, they are astounded and say they have never seen anything like it.

“I remember a nurse once, who had been working in hospitals for 30 years, was sick when she saw how wobbly my knee was.”

As well as enduring agonising physical pain, Jason suffers mental torment because of his CMT.

Regularly taunted by strangers for his gait and unusually skinny legs, the cruel jibes have hugely affected his confidence.

He continued: “Because I try to maintain my upper body strength, but have these very spindly legs, kids often abuse me in the street.

“I don’t feel like I have the same self-esteem any more. I used to approach them looking straight ahead, maintaining eye contact. Now I’m constantly looking at the ground, trying to make sure I don’t trip over something.”

After being laid off from his security job – where he worked at high-profile events such as TV talent shows – as he had difficulty walking, he has not since found permanent work.

And he knows a time will soon come when he will no longer be able to walk and will spend the rest of his life in a wheelchair.

“I should be in a wheelchair now. I’m not because I’ve tried to keep moving and maintain my strength, by doing exercise,” said Jason who while able to lift his own body weight at the gym, cannot even lift a bag of flour on his foot. “I also eat high-protein foods, which combined with the exercise I hope will keep me on my feet for as long as possible. But I can’t fight the inevitable force of this disease forever.”