Muscular dystrophy is a genetic, neuromuscular condition in which muscle cells break down and are gradually lost. Some types of muscular dystrophy are degenerative and ultimately severely disabling with a marked impact on life expectancy, whilst others cause only a relatively mild disability.
Duchenne muscular dystrophy is the most common childhood form, affecting only boys. It is also the most severe. Most boys with Duchenne muscular dystrophy show the first indications of the disease as they start to walk, or soon after. Usually, between eight and 11 years old, they become unable to walk and by their late teens or early twenties their life is severely at risk.
The degenerative muscle loss gradually affects all functions and, even when in a wheelchair, the child may develop a hunched posture, which creates breathing difficulties. A child with Duchenne muscular dystrophy may need to wear protective headgear and splints. Adaptations will need to be made to provide guide-rails by steps and in toilet cubicles for the early years. As boys lose the ability to walk by themselves they may use specially hinged callipers. The school will need wheelchair access and other adaptations for boys who are unable to walk at all.
A boy with Duchenne muscular dystrophy may:
- walk awkwardly and with difficulty on starting school
- be unduly floppy or stiff and have a tendency to fall unexpectedly
- lose his grip and drop things
- have weak bladder control
- have increasing fine and gross motor difficulties
- lack the ability to control or moderate his body temperature
- be in a wheelchair by the middle Key Stage 2
- need assistance with going to the toilet (which may be fairly frequently)
- need to spend time in a standing frame each day in the classroom
- need to have regular physiotherapy sessions during schooltime
- need to have adaptations made to the building, furniture and equipment.
You may need to:
- ensure that all staff are aware of the characteristics of Duchenne muscular dystrophy
- ensure that all children in the school understand the importance of taking care not to knock or impede the child, whether he is walking or in a wheelchair
- organise physical access around the school and make appropriate adaptations
- ensure that appropriately trained adult support is provided
- make use of ICT as a crucial aid to learning
- ensure that extra time is given for specific tasks
- ensure that children live as normal and independent a school life as possible
- liaise closely with parents about their child’s understanding of the disease
- provide a quiet room where the child can stretch out for his physiotherapy sessions
- make alternative arrangements at breaktimes on cold days
- have a buddy system to provide practical help in class and around the school
- liaise on a regular basis with the relevant professionals
- provide an adult mentor if the parents feel that their child needs someone to talk to.
Muscular Dystrophy Campaign