WHEN Tracey Roberts was a teenager, she often used to trip up and twist an ankle.

She didn’t think much about this inconvenience, till ten years ago, in her thirties, her fingers started to curl, and she went to the doctor with what she thought was carpal tunnel syndrome.

“I thought I had carpal tunnel in my hands as I was struggling to do zips, buttons and poppers. Also, my mum had carpal tunnel and similar symptoms. But when I went to my local hospital to talk about my hands, they said I didn’t have it.

“I couldn’t use my left hand very much and I wasn’t getting any answers, so I was sent to see a neurologist at the John Radcliffe Hospital in Oxford. He said as soon I walked into the room he knew I had CMT because of my unusual gait and drop foot on left side. He sent me for genetic blood tests, which confirmed it.”

The condition the specialist had recognised was Charcot-Marie-Tooth disease (CMT), and in the UK some 23,000 people are thought to be affected. CMT causes damage to the peripheral nerves which run from the spinal cord to the extremities and are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensations such as pain, heat, cold and touch.

The nerve damage may result in muscles becoming weaker over the years, particularly in the hands and feet, and the sense of feeling may become duller or numb.

“At that time, I had never heard of CMT so I went home and read all about it,” Tracey says. “I felt pretty shocked at the diagnosis and also extremely worried about what the future held for me.”

There is no cure, and the condition is progressive. September is CMT Awareness Month and Tracey, now 46, is keen to promote understanding of a condition which she says is so little known that even many doctors are not familiar with it.

“I would like more people to know about CMT. Sometimes people look at you and see you are walking in a funny way, or they think you are drunk because your balance is poor. Even though we do have this condition, it doesn’t make us any less than anyone else.”

CMT is an inherited condition, and once Tracey, who has lived in Highworth for seven years, was diagnosed, it soon became apparent that her father and almost all his relatives also had the condition. Two of Tracey’s four children are also affected. For each person, the symptoms and the severity varied.

“Since my diagnosis, 98% of my family on my father’s side have been diagnosed including my dad, brother, sister, uncle and aunty. All of us have different types of CMT and are at different stages. We believe my dad’s dad had CMT and that his mum passed it to him.

“I'm the only one in my family who has it in their hands and I also have a very weak diaphragm, so I sleep with a machine at night, which pumps air down my throat to help me breathe. When I lie down, my diaphragm sits on my lungs and is wasting because of my CMT.”

Tracey is mother to Samuel, 27, who has CMT, Stefan, 25, and Alisha, 22, who don’t have it and Emily-Jane, aged nine, who is showing signs of CMT because she says her arms ache and that she’s always tired.

“I also have a grandson Tyler who is three and he hasn’t been tested,” Tracey says. “Some days are better than others, however, I feel very lucky, as I’ve been given a brand-new bungalow, which has wheelchair access all the way around. It’s one of the best places I’ve ever moved to as I feel so safe. There is also a home line installed because I fall over so much, but help is there if I need it.”

Tracey relies on her daughter to help her at times, as she struggles to manage buttons and zips. In day to day life, Tracey has discovered various work arounds when it comes to cooking, shopping and cleaning.

“CMT does get me down at times but I’m a bubbly persona and I get by the best I can,” she explains. “Having CMT in the hands as well as the feet is particularly frustrating for me as it stops me from doing everyday things that other people just taken for granted, such as lifting. My wrists are weak due to CMT and they’re always giving way, so I drop things such as plates and bowls.”

She says her condition would continue to deteriorate over time: “It’s horrible. In the last ten years it’s got much worse. I try to stay as free from stress as I can, as that brings it on quicker.”

Tracey, who was born in Swindon and went to school at Headlands, before working at the Oven Door café, said a Facebook group for people with CMT had proved a great help and comfort.

“Being in the group has helped me such a lot. If you have a question, you get a lot of feedback.”

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

Steadily progressive, CMT causes muscle weakness and wasting in the lower legs and feet, leading to problems like hammer toes, restricted mobility, and uncontrollable pain. The hands and fingers are also affected, making tasks needing fine motor skills, such as fastening shoe laces and buttons, very difficult. Although CMT is not life-threatening, for many it will impact on and significantly reduce quality of life, with some people ending up as wheelchair users.

This year’s campaign aims to raise awareness of the symptoms of CMT among people who have not yet been diagnosed, to make more medical professionals aware of the condition, and to let people who have CMT know that the charity exists and is there to offer advice and support. It will also raise funds to help Charcot-Marie-Tooth UK members and pay for vital research into the condition.

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 including GPs, physiotherapists, orthotists, surgeons – and even neurologists - who 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."

“It is also important for us to reach those people who think they might have the condition but haven’t been diagnosed yet. Sometimes the symptoms aren’t obvious, but due to the fact that CMT affects the hands and feet, it could be they have trouble balancing, find they regularly trip or fall over and are constantly tired. For some women, a telling sign is that they can’t wear high heel shoes due to high arches and hammer toes.

“There could be many reasons for symptoms like these, but if you have any it would be a good idea to ask your GP about CMT - early diagnosis helps improve the lives of those with the condition and because there’s a 50 per cent chance it can be passed on from a parent to a child, professional genetic counselling can also be given.

“We know it’s an ambitious strategy but ideally, we’d like every new person told they have CMT to be automatically referred to us at the point of diagnosis, so we can offer our support with benefits, jobs and family issues and advise them on where to get specialist medical help.”

A professor of clinical neurology and consultant neurologist at University College London Hospitals, Mary Reilly is also patron of Charcot-Marie-Tooth UK. She explains: “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.”

Charcot-Marie-Tooth UK offers advice on how to manage the condition. Find out more at www.cmt.org.uk or contact 0300 323 6316 or donate by visiting www.justgiving.com/CMT