Research into the CMDs is however developing and holds the promise of future, early-stage clinical trials testing potential treatments for some of the symptoms of the condition.
What help is available?
Physiotherapy is one of the main forms of help. An initial physiotherapy assessment at the time of diagnosis should be followed by an exercise programme and regular check-ups. The main aim of physiotherapy is to keep the muscles as active as possible and to prevent or slow the progression of joint contractures. People with UCMD are encouraged to remain as active as possible. Swimming is a particularly good form of exercise.
Physiotherapists can also help provide orthoses, such as splints, long leg callipers and a wheelchair when necessary.
Children and adults with UCMD should ideally be followed regularly in a specialist neuromuscular clinic, with access to a multi-disciplinary team including physiotherapy, orthotic, respiratory, orthopaedic, spinal and genetic specialists as needed.