Minimise exposure to ultraviolet light by rigorous photoprotection with sunscreen and lip balm, protective clothing and ideally, UV-opaque face visor, will greatly reduce the skin problems. Windows in homes, car and schools should be covered with UV-resistant film. This will, however, result in the need for vitamin D supplementation.
Ideally patients should be regularly viewed by dermatologist and ophthalmologist, so that pre-cancerous lesions can be removed at an early stage, as well as neurologist and neuropsychologist to arrange for hearing aids, physiotherapy and occupational therapy and to address psychosocial issues. There are support groups in many countries.
XPA