MUSCULAR DYSTROPHY

The muscular dystrophies (MD) are a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.

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Causes of muscular dystrophy

MD is caused by changes in the genes responsible for the structure and functioning of a person's muscles. The mutations cause changes in the muscle fibres that interfere with the muscles' ability to function. Over time, this causes increasing disability. The mutations are often inherited from a person's parents. 

Symptoms of muscular dystrophy

MD is a progressive condition, which means it gets worse over time. It often begins by affecting a group of muscles, before affecting the muscles more widely. Some types of MD eventually affect the heart, or the muscles used for breathing, at which point the condition becomes life-threatening.

Treatment for muscular dystrophy

There is no cure for MD, but a range of treatments can help with the physical disabilities and problems that may develop:

• mobility assistance – including exercise, physiotherapy and physical aids.
• support groups – to deal with the practical and emotional impact of MD.
• surgery – to correct postural deformities, such as scoliosis.
• medication – such as steroids to improve muscle strength, or ACE inhibitors and beta-blockers to treat heart problems.

Supporting students with muscular dystrophy

• This condition is progressive, meaning that physical control and movement deteriorates over time. As a child gets older they will need more help at school.
• An Individual Healthcare Plan should be drawn up with parents/carers informed by advice from the medical team treating the student. 
• Regular review meetings should be scheduled. 

Physical needs

• Deteriorating fine motor skills will impact on writing skills. Ongoing review and assessment for adaptive or assisted technology are important. 
• Balance and gross motor skills will deteriorate over time. A wheelchair may be required. Assessment of access arrangements should be made and reasonable adjustments made. 
• Increased toilet breaks may be required. 

Supporting continuity of education

• Hospital appointments for physical therapies may result in tiredness, lateness or missed school days. Ensure a plan is in place to support with missed work.
• Liaise promptly with Hospital School staff if inpatient admission is required.

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