For severely affected infants’ therapy is focused on managing contractures with 24-hour postural advice and if necessary, orthotics and bracing.

Strengthening exercises may also be beneficial, however caution should be applied in very fragile and labile infants. Aerobic exercise at a submaximal level is recommended and eccentric, excessive and resistive exercise should be avoided.

Respiratory intervention may also be required, and suitable expertise and advice should be sought for this. Manual chest physiotherapy may be recommended.

In older children and adults, management of contracture and muscle tightness may be important and stretches and postural management orthotics may be of benefit.

Eccentric, excessive and resistive exercise should also be avoided in this older group, but a structured programme of exercise may be appropriate. They should be encouraged to do exercise regularly and choose something that they enjoy and that fits their daily life.

Caution should be given to those individuals who have respiratory impairment. This does not mean they cannot exercise but attention should be given to the level of exercise and its impact of respiratory function.

Gentle exercise which promotes core strength and stretching such as yoga and Pilates (performed at a sub-maximal level) may be motivational and beneficial for some.