In general the earlier the onset of the disease the more severe and progressive the disorder is. In the form which is noticeable at birth, there may be early life-threatening breathing difficulties and extreme floppiness. In most cases, however, the disease is only slowly progressive and most patients become weaker in their 20s or 30s and may eventually lose the ability to walk. Occasionally muscle weakness may progress quite rapidly and these patients experience serious breathing problems. At the moment, there is no cure, nor any drug treatment for nemaline myopathy.
Physiotherapy is one of the main forms of help.
An initial physiotherapy assessment at the time of the diagnosis should be followed by an exercise programme and regular check-ups. Children and adults are encouraged to remain as active as possible and ensure that they do not become overweight to limit the strain imposed on their weak muscles. Swimming is a particularly good form of exercise.