For the first time in the UK, a short-film has been launched to raise awareness of the world’s most common inherited neurological condition Charcot-Marie-Tooth (CMT). It aims to spread the word about the condition because so few people have heard of it. Watch the film at http://cmt.org.uk/video/
The film has been backed by CMT expert and President of the Association of British Neurologists, Professor Mary Reilly and charity CMT UK, which supports people with CMT, a condition with a wide variety of symptoms including uncontrollable pain, chronic fatigue, unstable ankles, balance problems and falls.
The one minute film – the idea for which came from Douglas Sager (67) who found out he had CMT in 2011 – features people of various ages and at different stages of the condition including Harvey Rogers (10) who has minor nerve damage, his mother Lisa Rogers who has difficulty walking and Emma Lines who is now in a wheelchair and struggles to open a can of pop due to poor co-ordination in her hands. It is interspersed with X-ray style animation so that each person is shown as a digital body of nerves, revealing what can happen when they malfunction.
While CMT is currently incurable, early, accurate diagnosis can improve the lives of those with the condition. Charcot-Marie-Tooth is named after the three scientists who discovered it. Steadily progressive, it causes muscle weakness in the lower legs and hands, leading to problems like hammer toes, restricted mobility, uncontrollable pain and carrying out tasks needing fine motor skills, such as fastening shoe laces. However, people with CMT have a reasonable quality of life with normal life expectancy.
CMT UK’s chief operating officer, Karen Butcher said: “Douglas fundraised for this film off his own back and we are delighted with the end result, which is compelling, human and informative. There is so much to tell people about CMT but this captures the bones of it well.”
The CMT awareness campaign is being backed by medical professionals including Professor Mary Reilly.
The film was written, produced and directed by award winning film maker and director, Tim Partridge and also has the backing of Shadow Foreign Minister, Catherine West MP.
Catherine said: “I first met Douglas when he came to my constituency surgery and told me about Charcot-Marie-Tooth disease, its problems and lack of awareness about it. It was wonderful to launch the film in Parliament and I hope that it will lead to greater awareness of the cause and symptoms not only in the UK but throughout the world”.
To donate visit www.justgiving.com/CMT
To find out more visit www.cmt.org.uk or contact 0800 6526316.
ACNR V16:I3;Nov-Jan 2017;p31
Published online: 2/12/16