September is a notable month for 50-year-old Lisa Welsh from Harborne, Birmingham, because it sees the beginning of the Paralympic games as well as being Charcot-Marie-Tooth awareness month, both of which have played an important part in her life.
Lisa was born with CMT, one of the most common, inherited neurological conditions in the world. Named after the scientists who discovered it, CMT is a currently incurable and steadily progressive condition. It affects around 23,000 people in the UK, causing muscle weakness in the lower legs and hands and Lisa, who has a severe form of CMT, now uses a wheelchair.
Yet having the condition led Lisa, at the age of 22, to compete in the 1984 International Games for the Disabled in New York, a precursor of today’s Paralympics. It is an experience she will never forget, particularly as she exceeded expectations, winning a bronze medal in the 25 metres backstroke swimming event and a gold medal in the club- throwing field event.
“Being chosen to compete for Team GB in the Games was an honour and winning gold and bronze medals was simply amazing,” says Lisa.
“This was a huge adventure for me at 22. I had never flown before and here I was flying for the first time ever to New York to represent my country. Swimming was my primary event so I was a little shocked and overwhelmed to win gold for club-throwing. The closing ceremony took place on my twenty third birthday - which really was the icing on the cake – it was an experience I’ll never forget.”
Most people are diagnosed with CMT in adolescence or early adulthood, but for some people it is not identified until later in life because of a general lack of awareness in the medical profession.
Lisa’s father had CMT and her mother knew fairly soon after she was born that there was something wrong with her.
“Mum took me to the doctor’s,” Lisa says, “but he thought I was just copying the way my father walked. However, she persisted and I was officially diagnosed at the age of four.”
People who have CMT are often fatigued, walk awkwardly and suffer twisted ankles, balance problems, pain and falls for many years without ever knowing why. As a result, they can be left feeling bewildered and extremely isolated. Fortunately, Lisa’s early diagnosis meant that her school and her friends were aware of her condition, the problems it caused and how these problems could best be overcome.
“I used a wheelchair at 12 and started using a power wheelchair at 29. For me this wasn’t a step backwards but a step forwards as it enables me to live life to the full and do want I want to do. I’ve travelled around the world, I’m chair of the charity CMT United Kingdom and in August, I supported friends who cycled from Land’s End to John O’Groats. My condition doesn’t stop me doing what I enjoy and I will always be determined to make the most of what I have.”
CMT Awareness Month
September 2012 marks an international effort to generate greater awareness of the condition, with charities in the UK, the US, France and Australia joining forces.
Medical professionals, including leading neurological expert Professor Mary Reilly, are championing the campaign, which aims to increase early diagnosis for affected people and stimulate further research into the condition.
Karen Butcher from CMT United Kingdom said: “CMT affects some 23,000 people in the UK and yet not many people have heard of it or know its symptoms.
“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. Later in the disease there is difficulty with carrying out tasks requiring fine motor skills so it can be hard to do buttons up, etc.
“Once people are diagnosed with CMT, they often only know others in their family with the condition and feel very isolated. It is important that we reach these people, arm them with information and let them know that they can have a reasonable quality of life with normal life expectancy.”
CMT United Kingdom is a registered charity, set up in 1987 to help those with CMT and has around 1,700 members in Britain. To find out more visit www.cmt.org.uk