IT is one of the most common, inherited neurological conditions in the world, and affects around 23,000 people in the UK, but Charcot-Marie-Tooth (CMT) syndrome is a little known disorder.
Named after the scientists who discovered it, CMT causes muscle weakness in the lower legs and hands. It is currently incurable and steadily progressive and can affect generations of families, as Buxton’s Ivy Peach knows only too well.
The 64-year-old, of Lismore Grove, was born with CMT but it wasn’t until her son Martin was diagnosed with the disorder in 1975 that she too discovered she was a sufferer. Four of Ivy’s brothers and other members of her family have also been found to have CMT.
After years of problems and frequent falls, Ivy has now had operations on both of her feet as well as on her left knee. She is due to undergo an operation on her right knee in October. Living with the condition brings daily struggles for Ivy, and the thousands of other sufferers across the world.
“The pain is atrocious,” she said. “You get very tired and can’t walk far. I have to go then stop and if I go anywhere of any distance I always go with my sister because I’m still not very comfortable.
“It is very difficult to live with but there is nothing you can do about it so you just have to take the painkillers and get on with it.
“It’s just a shame there’s not more awareness about it.”
September has been designated Charcot-Marie-Tooth syndrome awareness month and tomorrow (Friday) is global awareness day.
Charities and medical groups across the UK and beyond are joining forces to raise awareness of CMT and encourage earlier diagnosis, which can improve the lives of those people with the disorder.
Karen Butcher, trustee at CMT UK, said: “It is the seemingly little things that can really affect those with CMT in a big way; hammer toes can make wearing shoes painful and most people find it difficult to find suitable shoes, let alone fashionable ones.”
Ivy is keen to help people with CMT and anyone who is suffering with the condition and needs help and support can contact her on 01298 77132 or 07971 177436.