Minimise exposure to ultraviolet light by rigorous photoprotection with sunscreen and lip balm, protective clothing will 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 any pre-cancerous lesions can be removed at an early stage, as well as by neurologist and neuropsychologist to arrange for hearing aids, physiotherapy and occupational therapy and to address psychosocial issues. There are support groups in many countries.
XPG