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SPECIAL REPORT: Cowbit man racing for a cure to help others with debilitating condition CRPS




Despite being diagnosed with a crippling condition that means some days he cannot get out of bed due to pain, James Wilson-White is doing everything he can to help other sufferers.

James (44), who lives in Cowbit, was diagnosed with a rare condition called Complex Regional Pain Syndrome (CRPS), after an accident at work in July 2000 in which he broke his leg.

It is a painful and debilitating condition that affects the nervous system, and it can be triggered by something as simple as stubbing your toe. There is currently no known cure.

Motor racing fan James Wilson-White with his trademark 'racing green' crutches. Photo by Andrew N Fitzpatrick. (5318694)
Motor racing fan James Wilson-White with his trademark 'racing green' crutches. Photo by Andrew N Fitzpatrick. (5318694)

James said: “Unfortunately, I had an argument with a wheelbarrow full of cement at work and the side of the wheelbarrow smashed into my leg.”

But after his leg healed he was left with a pain that would not go away and which had rapidly spread to his right arm, hand and shoulder.

Doctors could not work out, at first, what was wrong.

“I was sent to a pain clinic at the Fitzwilliam Hospital in Peterborough, and told them how my leg would go hot, then stone cold and it would feel like barbed wire around my leg.

“He (the consultant), said ‘I know what you have,'" and James was diagnosed with CRPS, also known as Reflex Sympathetic Dystrophy (RSD).

The NHS describes CRPS as 'a poorly understood condition in which a person experiences persistent severe and debilitating pain.'

"I was sent to a pain clinic and told them how my leg would go hot, then stone cold and it would feel like barbed wire around my leg."

It explains that the cause is unknown, but is generally thought to be the result of the body reacting abnormally to an injury.

Sadly, it was once believed that CRPS was a 'psychosomatic condition' the NHS explains on its website, but research has disproved this.

James has now lived with the condition for 18 years, needing crutches to get around most of the time but has fantastic support from his wife Emma, stepson Liam (24), daughter Abbie May (8) and son Jenson (3). His son is named after racing driver Jenson Button and it is his love of motor racing that has helped James raise awareness of his condition.

James with his racing memorabilia. He has the support of the motor racing world in helping to raise awareness of CRPS. (5318696)
James with his racing memorabilia. He has the support of the motor racing world in helping to raise awareness of CRPS. (5318696)

Sunday, November 18, marks the first anniversary of the group CRPS Awareness Racing 4A CURE, run by James and others who have CRPS.

Last year at Brands Hatch, he and his friend Charles Carter (who also has CRPS), organised a ‘CPRS - Racing for a Cure' event. Several racing cars carried the group's livery and the cause was promoted during the Into the Night race at the same track the following weekend.

This year, they’re doing the same again on November 18, at the Britcar Endurance into the Night Race - again at Brands Hatch. And they have also had the support of driver Freddie Hunt, son of the legendary racing driver James Hunt, who has carried the logo and helped to promote awareness of the condition.

James said: “We have started trying to get it into the Formula One stage. Everybody has been very positive and the best thing is the motor sports, for me, have been brilliant. And people who have joined us who were not into motor racing, say they now follow it.

"November is CRPS awareness month, also known as ‘Nervember.’ On November 5, which was CRPS Day, I was getting people to wear orange, because orange is the CRPS colour. "They were wearing wristbands, t-shirts or dyeing their hair or beards orange. It went on Facebook and went all around the world - as far as to Canada. People were even getting their own t-shirts printed."

“Our group has been going a bit global,” he added. “We have had people getting in touch from Australia and America where someone said they are trying to do the same thing as us there - it could go worldwide."

He added that MP for South Holland and the Deepings John Hayes has also helped support him by raising awareness in parliament on conditions such as his.

"The paramedic tried to put a blanket on me and I explained that just having the blanket on hurt my leg."

"The government is trying to get more awareness on having these 'invisible' illnesses and rare conditions. I think more people are noticing it. I saw a programme on TV the other day and there was a young girl on it from the Lincolnshire region who has the condition."

And James has said that in the past, explaining what CRPS feels like has been hard.

"I had a fall in my old house when I fell down the stairs and the paramedic tried to put a blanket on me and I explained that just having the blanket on hurt my leg. He said that he would move it down but I was trying to explain that just the touch of the blanket would flare my leg up for two to three hours - or a day - or put my leg in spasm.

"Putting straps across my leg when they put me on the stretcher would cause pain. I would fall on a regular basis and my whole body would ache."

James hopes that by telling his story he can help more people who have conditions such as his. His Facebook page can be found by typing CRPS Awareness - Racing 4A Cure into the search bar.

James Wilson-White and young racer Ayden Hassan at Fulbeck Kart Club, near Grantham, last month. This was for an event to raise awareness and money for research into conditions such as CRPS. Photo supplied. (5318698)
James Wilson-White and young racer Ayden Hassan at Fulbeck Kart Club, near Grantham, last month. This was for an event to raise awareness and money for research into conditions such as CRPS. Photo supplied. (5318698)

The slightest touch, bump or temperature change can provoke intense pain:

The NHS explains on its website that CRPS is a poorly understood condition.

It says that although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

'The pain is usually confined to one limb, but it can sometimes spread to other parts of the body,' it adds.

'The skin of the affected body part can become so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain.'

The NHS says that many cases of CRPS gradually improve to some degree over time.

But some cases of CRPS never go away, and the affected person will experience pain for many years.



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