Some 25,000 people are thought to be living with Charcot-Marie-Tooth (CMT) disease in the UK, making it the most common inherited neurological condition, although many people have not even heard of it. UK-based charity CMT UK, which provides support to those affected by the condition in the UK, is hoping to change that during its October awareness month.
CMT is a hereditary condition that damages the peripheral sensory and motor nerves. Because of the nerve damage, people living with CMT may find that their muscles become slowly weaker over the years, particularly in their hands and feet, arms and lower legs and the sense of feeling can become dull or numb in these areas. As there are over 100 diagnosed types of CMT, symptoms can vary hugely, although some other key points about CMT are that it can cause chronic pain and fatigue. Some early symptoms could include difficulty walking because of foot drop, high arches, or abnormally flat feet; others will experience a weakness in the hand and forearms; some children may experience a ‘clumsiness’ and fall over, and a difficulty with running and general agility.
CEO of CMT UK, Simon Bull, says “if we could get people talking about CMT during the awareness month and beyond that would be amazing. Even if we can help just 100 more people to be diagnosed with the condition, it would really help them to manage their symptoms. It would also mean that we could provide support to those already living with CMT, but didn’t know about our charity; and, by increasing awareness of CMT to health professionals, patients could get diagnosed quicker with faster access to any treatment or support.”
Simon goes on to say “if anyone would like to help us to spread the word about CMT further during October, search for our posts using the hashtag #CMTawarenessmonth on Facebook, Twitter and Instagram and feel free to share our details about the condition, together with help available to those that may be affected by CMT.”
Simon added “Most of CMT UK’s trustees are living with CMT, so they know first hand the type of support that is needed for our members. For a small charity, it’s really active with lots of information available about the condition, managing it, and living well.
“There are also regular member meet ups organised by regional support groups, annual conferences, a special group for children affected by CMT and of course fundraising. Without all the very generous donations we receive, we would not be able to support all our members and health professionals, so any donation of any size is really gratefully received.”
CMT UK has put together an awareness pack for those potentially living with CMT, as well as a separate information pack for GPs who would like to find out more. To request a free pack or for more information, call the CMT UK helpline on 0300 323 6316 between 9am-2pm Mondays to Fridays or visit the CMT awareness month webpage.