Minimising exposure to ultraviolet light by rigorous photoprotection with sunscreen and lip balm, protective clothing and ideally, UV-opaque face visor, 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, ophthalmologist, so that pre-cancerous lesions can be removed at an early stage, neurologist and neuropsychologist to address psychosocial issues There are support groups in many countries.
XPE