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.
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.
- 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.
- 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.