Debilitating disorder dystonia is so rare

It’s not only dystonia sufferers’ necks that are affected by the condition, but many muscles and limbs throughout the body.

The spasms are uncontrollable and can twist the body into awkward postures, causing patients a lot of pain and frustration.

Dystonia occurs when the nervous system is overcome by chaotic signals, causing the muscles to contract involuntarily.

It affects just 65,000 people in the UK, 0.1 per cent of the population, with women being more prone than men.

Despite the rarity of the condition, it is the third most common movement disorder behind essential tremor and Parkinsons disease.

The Dystonia Foundation report that, much like John’s case, a staggering 70 per cent of sufferers are misdiagnosed prior to being told they have dystonia.

As well as head trauma and viral infections, causes include genetics and drug abuse.

Despite no cure being known for the neurological malfunction, researchers believe treatment may be more successful when symptoms are treated early.

This is why John is keen to spread awareness of the disease’s warning signs.

Abnormal head and neck movements, excessive blinking, a breathy or strangled-sounding voice, stamping of the foot, hand cramps and twisted feet are all symptoms of the debilitating condition.

President of the Dystonia Medical Research Foundation, Art Kessler, said on the charity’s website: “Individuals often suffer for years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life.

“Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and peer support from others who understand the challenges of living with dystonia.”

Huge help John with his daughters Ellie, Lucy and Abbie John now has wires running from his brain to an electronic box in his chest