Having put her accident prone nature down to clumsiness, Dawn Genner has since been diagnosed with a neurological condition many sufferers may not realise they have. She speaks to health reporter Kate Liptrot.

DISCOVERING she had the neurological condition Charcot-Marie Tooth disease at the age of 19 suddenly made a lot of sense to Dawn Genner.

Unsteady on her feet and having dislocated her knee some 250 times in her life, Dawn hadn’t been aware of the condition CMT until her mum was diagnosed and doctors suggested her daughter may have inherited it.

Despite being world’s most common, inherited neurological conditions, not many people have heard of the progressive condition which damages sufferers’ peripheral nerves, causing muscle weakness, highly arched or very flat feet and wasting and loss of sensation in feet, legs and hands.

It is thought to affect some 23,000 people in the UK, and causes suffers to get easily fatigued, walk awkwardly, endure painful limbs, twisted ankles, balance problems and falls, but does not affect life expectancy. “It’s good to have an explanation,” Dawn, who lives in South Bank, York, said: “But the word progressive is quite daunting, they have no idea how it will progress with me. It might stay the same or change a lot.”

While her brother was found not to have inherited CMT – the family believes her grandfather may also have had the condition and Dawn knows there is a 50 per cent chance that if she has children in the future, they could also inherit it.

For Dawn, now 26, the diagnosis made sense of her balance problems.

“My balance is shocking,” she said.

“I wobble about and trip a lot. I stumble a lot. My mum always said I could trip over my own two feet.

“I have always been clumsy, that’s another symptom, I have had a couple of stress fractures in my feet.

“I have been to A&E about seven times because my knee, which has dislocated about 250 times. Sometimes it sorts itself out and the knee goes in the right place, but if not I have to been carted off to hospital.

“It’s not a shock at all for my family or friends if they see me with a crutch or a bandage on.”

But the English language teacher said that while she feels quite matter-of-fact about dealing with the condition, people can misunderstand her symptoms.

“Sometimes a disability is not visible. A lot of people would not know anything is wrong with me,” she said, adding that others have made fun of her balance difficulties.

“It’s funny for a while, but sometimes there can be a reason for that. Sometimes people are quite insensitive, they don’t realise it’s something wrong medically.”

Dawn tries to raise awareness of CMT, wearing a T-shirt from the charity CMT UK when she goes to the gym, and giving out leaflets on a awareness day last month.

CMT UK encourages people with the condition to get in touch with the charity for advice and support, as well as reach those who may not be aware they have CMT and are suffering in silence.

Chief operating officer at CMT UK, Karen Butcher, can trace CMT back six generations through her family and she passed the condition to her daughter, Catherine, 21, and son, Jason, 16.

Karen said: “With this condition, it’s the seemingly little things that can affect people with CMT in a big way; hammer toes can make wearing shoes painful and most people find it difficult to find suitable shoes. Later in the disease, mobility is greatly restricted, requiring various aids to continue to walk, uncontrollable pain is common and there is difficulty with carrying out tasks requiring fine motor skills, like fastening shoelaces or opening jars.

“People with CMT however, should know they can have a reasonable quality of life with normal life expectancy.

“Just recently my daughter Catherine was asked by her lecturer why she was fidgeting and because she knows all about the condition, she was able to explain that she was moving from leg to leg because CMT affected her balance.

“People who didn’t know they had the condition wouldn’t be able to give an explanation and could feel self-conscious and embarrassed.

“There are two main types of CMT and various classifications within each type, so it can get complicated. If people with CMT get in touch, we could possibly gain from them too if they would be happy to help with research or take part in trials.

“This is a rare condition and there is so much more to learn about it. The other main purpose of this awareness month is to raise money to further improve our services and fund clinical trials – we’ve set out ambitious plans to raise £2m over the next five years.”

Professor Mary Reilly, a consultant neurologist and patron of CMT UK, said: “CMT has many different characteristics, but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs, but also in the hands and arms in the advanced stages of disease. These lead to a range of orthopaedic complications, leading to a variety of mobility and dexterity problems, and sometimes scoliosis.

“CMT does not describe a single disorder, but a group of conditions. It is important to determine exactly what kind of CMT someone has, in order to improve their quality of life and this can only be done once a diagnosis is considered in a patient. 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 and support.”