Treatment Congenital muscular dystrophy

There is currently no cure for the congenital muscular dystrophies, but there are ways of helping to manage the effects of the condition.

As this condition can be managed by timely recognition, professional advice and intervention, it is advisable for individuals with congenital muscular dystrophy to be regularly followed by a paediatric neurologist with expertise in muscle-wasting conditions, working as part of a multi-disciplinary team. Review should include monitoring weight, respiratory function, muscle strength and joint range. There are several additional examinations that might be needed, such as overnight sleep studies to monitor the breathing quality during sleep and, in some subtypes, a yearly echocardiogram. In children with respiratory impairment, it is also advisable to reduce the risk of chest infections by giving annual flu immunisations and other vaccinations.

Children and adults with congenital muscular dystrophy should ideally be followed regularly in a specialist neuromuscular clinic, with access to physiotherapy, orthotic, respiratory, orthopaedic, spinal and genetic specialists as needed.