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Global awareness campaign launched for the world’s most common inherited neurological disorder
Medical groups and charities across the world are coming together this September to raise awareness of Charcot Marie Tooth (CMT) syndrome, a neurological condition, which affects around one in every 2500 people.
CMT is one of the most common, inherited neurological conditions in the world, affecting around 23,000 people in the UK, it causes muscle weakness in the lower legs and hands. September 2011 will mark an international effort to generate greater awareness of the condition, with charities and medical groups in the US, France and Australia joining forces.
24th September is Global CMT Day, but throughout September CMT United Kingdom, the UK based charity and support group for people with CMT, is encouraging its members to host tea parties to help raise awareness and funds for the group. Medical professionals, including leading neurological expert Dr Mary Reilly is championing the campaign, which hopes to increase early diagnosis for sufferers and stimulate further research into the condition.
Charcot
Marie Tooth Syndrome (CMT), named after the scientists who discovered it, is
also known as Hereditary Motor and Sensory Neuropathy (HMSN), or Peroneal
Muscular Atrophy. It is a heterogeneous inherited disorder of nerves that is
characterized by loss of muscle tissue and touch sensation, predominantly in
the feet and legs but also in the hands and arms in the advanced stages of
disease. Symptoms and progression of the disease can vary. Scoliosis is common
and other orthopaedic complications such as foot problems are common, breathing
can be affected in some but this rare. CMT is presently incurable, however
early
diagnosis can improve the lives of those with the condition.
Karen Butcher from CMT United Kingdom comments:
“In many ways CMT is a secret condition, it’s never spoken about and few people know that it even exists. There’s a general lack of awareness in the medical profession, so people fail to be diagnosed quickly enough, meaning that many endure painful limbs, falling over and balance problems, for many years. Those that have been diagnosed don’t speak of CMT, because the lack of awareness makes them feel embarrassed and isolated. By raising awareness of this condition we hope to alleviate these problems.”
Dr Mary Reilly, Consultant Neurologist at the MRC Centre for Neuromuscular Diseases, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, is backing the campaign, she said:
“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.
"This can be done fairly easily through examination, taking a family history, nerve conduction studies and genetic studies on blood samples. However, this sort of assessment can only be done once the diagnosis is considered in a patient, which based on research by CMT United Kingdom is taking longer than we would hope. Many people put up with CMT for a long time thinking that they are clumsy or have funny feet, suffering in silence when they could be receiving help and support.”
CMT United Kingdom will also be raising awareness throughout September with a poster campaign in medical centres across the country.
