LEDBURY man Jason Sandford has been chosen by a national charity to help raise the profile of a little known but debilitating condition which has had a huge impact on his life.

As Charcot-Marie-Tooth (CMT) Awareness Month approaches, Mr Sandford, aged 42, who has been suffering from the illness from an early age, has agreed to be spotlighted as a local case study for the campaign.

Mr Sandford, of Bramley Close said: "If I fall off a kerb, the result is dislocation. It changes your whole attitude towards life, and you have to deal sometimes with the negative attitude of other people, because this is an invisible disease."

People have even questioned the use of his blue badge for parking.

Mr Sandford said: "People think you are blagging the system."

But the effects of the illness on Mr Sandford's life have been all too real.

He worked in the security industry, but that ended when his employers found out about his serious disability, and Mr Sandford decided not to have a family, because of the high risk of passing on the condition.

He said: "It's had an absolutely massive impact on my life. Sometimes you have to force yourself to walk, and I can go through the pain barrier four or five times a day."

Mr Sandford added: "“I first started showing signs of CMT from a very young age, as I used to trip and fall over a lot. As a youngster I did a lot of karate and I thought everyone was able to roll their feet into a fist. In fact, one of the first doctors I saw thought this was a result of the karate, but it wasn’t, it was also a sign of CMT.

“When I was 13 somebody tripped me from behind and I dislocated my knee; it was the start of many knee dislocations over the years."

Finally Mr Sandford was referred to a nerve test, and he tested positive for CMT. But he still feels he has been failed by the medical profession.

He said: "I’ve been bounced from hospital to hospital. I have a very rare type of CMT and I don’t think the doctors know what to do with me, I feel failed by them. My CMT is accelerating pretty rapidly. I’ve had lots of surgeries on both knees and even thought I’d like to work and have qualifications, when employers see I’m disabled I just get swept aside.”

Throughout September, a charity is raising awareness of this little known, genetic, neurological disorder, which can cause uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.

CMT Awareness Month is being launched by charity Charcot-Marie-Tooth UK on September 1. Last year, the campaign received an unexpected boost when former Girls Aloud star, Cheryl Tweedy, posted on Instagram about the condition, which affects her friend’s son.

Leading neurological expert, Professor Mary Reilly, estimates around 23,000 people in the UK have Charcot-Marie-Tooth, which is named after the three scientists who discovered it.

Although CMT is not life-threatening, for many, it will impact on and significantly reduce the quality of their lives, with some people even ending up as wheelchair users.

CMT UK’s chief operating officer, Karen Butcher can trace the CMT back six generations in her family. She said: “There are still too many medical professionals that still don’t know what CMT is, therefore an integral part of this year’s campaign will be to educate them about the condition, so they can help make a diagnosis if needed.

Professor Reilly, who is also Patron of Charcot-Marie-Tooth said: “Anecdotal evidence from CMT UK tells us this takes much longer than we would like and many people put up with CMT for a long time thinking they are clumsy or have funny feet, suffering in silence when they could be receiving help."