Treatment Bethlem myopathy

At present there is no cure for Bethlem myopathy but there are ways, described below, of helping to alleviate the effects of the condition. Research into the congenital muscular dystrophies is nevertheless developing, and it is likely that clinical trials will start in the not-too-distant future.

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 (tightness). Individuals with Bethlem myopathy are encouraged to remain as active as possible. Swimming is a particularly good form of exercise. Physiotherapists can also provide advice on orthoses, walking aids and a wheelchair, when necessary.

Occasionally, surgery to release the Achilles tendons can help individuals with Bethlem myopathy to stand and walk more easily.

Children and adults with Bethlem myopathy should ideally regularly visit a specialist neuromuscular clinic, with access to physiotherapy, orthotic, respiratory, orthopaedic and genetic specialists as needed.