MDC1A can be helped by timely recognition, professional advice and intervention. It is advisable for people with MDC1A to be regularly followed by a neurologist with expertise in muscle-wasting conditions, ideally working as part of a multi-disciplinary team. Reviews should include monitoring of weight, respiratory function, muscle strength and joint range, with the co-ordination of sleep studies to assess breathing quality during sleep. Annual ‘flu immunisations’ as well as other vaccinations are advisable to reduce the risk of chest infections.
Children and adults with MDC1A should ideally be followed regularly in a specialist neuromuscular clinic, with access to physiotherapy, orthotic, respiratory, orthopaedic, spinal and genetic specialists as needed.