About Muscular Dystrophy
Muscular dystrophy is a group of inherited genetic conditions that cause progressive muscle weakness and wasting over time.
There are over 60 types of muscular dystrophy and related neuromuscular conditions. Duchenne muscular dystrophy (DMD) is the most common and severe form affecting children, primarily boys. It typically becomes apparent between the ages of 2 and 5. Becker muscular dystrophy is a milder form with a later onset. Other types, such as limb-girdle, facioscapulohumeral and myotonic dystrophy, vary in their presentation and progression.
The progressive nature of many forms of muscular dystrophy means that a child's needs will change over time. Schools should work closely with families and the multidisciplinary team to anticipate and plan for changing needs. An Individual Healthcare Plan should be regularly reviewed and updated.
How Muscular Dystrophy May Affect a Pupil
- Progressive muscle weakness, affecting mobility, fine motor skills and eventually other muscles
- Increasing difficulty with walking, climbing stairs and getting up from the floor (in DMD, many boys use a wheelchair by their early teens)
- Fatigue, as weakened muscles require more effort for everyday tasks
- Difficulties with handwriting and practical tasks as hand and arm strength decreases
- Breathing difficulties in later stages
- Some types (particularly DMD) are associated with specific learning profiles; approximately one-third of boys with DMD have learning difficulties
- Emotional impact, including frustration, grief and anxiety about the future
- Absences for hospital appointments, assessments and treatment
Classroom and School Strategies
Physical Access
- Plan ahead for changing mobility needs; consider future wheelchair access even if not currently needed
- Ensure ramps, lifts and accessible facilities are available
- Allow extra time for moving around the school
- Consider timetabling to minimise distance between classrooms
- Provide a safe, accessible workstation and seating as recommended by the occupational therapist
- Develop a personal emergency evacuation plan
Supporting Learning
- Provide alternatives to handwriting as needed (laptop, tablet, voice recognition software)
- Offer adapted practical equipment and pre-prepared resources
- Allow extra time for tasks and assessments
- Be aware of the specific learning profile associated with some types (e.g. DMD may affect verbal working memory)
- Provide catch-up support after absences
- Use a sloping board to reduce the effort of writing
Physical Education
- Adapt PE activities to enable participation; the physiotherapist can advise
- Include the pupil in meaningful roles (coaching, scoring, refereeing) when physical participation is not possible
- Follow physiotherapy and occupational therapy advice about safe activities and stretches
- Be mindful that the pupil may want to keep up with peers; support them sensitively when activities become more difficult
Emotional Wellbeing
- Provide access to emotional and pastoral support
- Be alert to signs of low mood, anxiety or social withdrawal
- Foster friendships and peer relationships
- Maintain high expectations and treat the pupil as an individual with their own interests and goals
- Support transition planning from an early stage
- Be aware of the impact on siblings who may also be in the school
Further Information and Resources
Muscular Dystrophy UK provides schools guidance, grants and support for families.
NHS information on muscular dystrophy offers accessible medical information.