Charcot-Marie-Tooth Disease is a genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, and importantly for balance. – where your joints are in space (sensory nerves). Because of this nerve damage, people with CMT may to muscles become weaker particularly in the feet and hands. Sometimes feeling becomes duller, or numb, in the same areas.
CMT is degenerative – and there is no cure. But symptoms can be managed. It can present at any time of life, including in childhood. That said, most children with neuromuscular conditions (like CMT) can be fully included at their local mainstream school, and will receive the best education there, enabling them to reach their full potential. It does need to be recognised and managed and getting it right is a rewarding experience for all involved and will greatly enrich any school and community.
The issues to be managed are physical and emotional.
Physically some children will be less mobile and may need more time or assistance moving around the school. There may be limits on some physical actiyities – but the right exercise regime is important in the management of CMT. The child may need to wear splints to support ankles – and / or wrists. Holding a pencil may or may not be a problem, and, particularly for younger children, weakness in the hands can lead to difficulties in common situations where some modicum of strength and dexterity is required – changing shoes, or using the toilet for example.
CMT has no impact on intellectual ability, but sensitivity to the emotional response of the child – or others – is important. A fine line exists between expecting too much from a child and being overprotective, both for well-intentioned parents and teachers alike.
CMT shows differently in people and children are no exception. It is obviously important that teachers communicate closely with the parents of a child and use their own observations and judgement to determine whether any extra classroom help is appropriate in any particular case.
Muscular Dystrophy UK have announced the launch of a new online course for teaching and education staff working with children with a muscle-wasting condition. You can find it at https://www.musculardystrophyuk.org/news/news/new-online-course-for-teaching-and-education-staff-launched/
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