Do you know what CMT is?
CMT UK is hoping Charcot-Marie-Tooth (CMT) Awareness Month 2014, which launched this September, will encourage 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.
Charcot-Marie-Tooth, one of the world’s most common, inherited neurological conditions, is named after the scientists who discovered it. Currently incurable and steadily progressive, it is thought to affect some 23,000 people in the UK, causing muscle weakness in the lower legs and hands. People with CMT get easily fatigued, walk awkwardly and endure painful limbs, twisted ankles, balance problems and falls.
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 shoes laces 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.”
During September 2014, CMT support groups across the UK, US, France and Australia work hard to raise awareness of the condition. Early detection can improve the lives of those with CMT and while most people are diagnosed in adolescence or early adulthood, for others it is not identified until later in life because of a lack of awareness in the medical profession.
Karen continues: “We want to raise awareness about the symptoms and the support available to people with CMT, in terms of advice on managing the condition as well as helping with benefits, jobs and family issues. If you have it, get in touch because we can provide a credible and reliable source of information.
“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.”
The CMT awareness campaign is being backed by medical professionals including leading neurological expert Professor Mary Reilly.
Professor Reilly explains: “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.”
CMT United Kingdom is a registered charity set up in 1987 to help those with the condition. The charity has around 1,400 members in Britain. To find out more visit www.cmt.org.uk
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