Twelve people with erythropoietic protoporphyria (EPP) answered a written questionnaire and were subsequently interviewed. They had all learned to cope with the disease, but found their lives severely restricted. They found that they were seldom understood by others and they suffered considerable physical and psychological distress. Only one subject had any knowledge of the pathophysiological mechanism of EPP. The physician has an important role in recognizing this condition and in providing practical advice and supportive counselling to help patients cope with the disease.