title: [Erythropoietic protoporphyria: coping with the disease from the biopsychosocial viewpoint].
abstract: Twelve patients suffering from erythropoietic protoporphyria (EPP) were interviewed about the biopsychosocial aspects of their disease. Painful cutaneous symptoms, anxiety and social stigmatization weight the patients down. Nevertheless, most suffers of this disease do not use all of the resources medical care could provide. Their strategies for coping with this chronic disease include unconscious defense mechanisms and a coping behavior that is largely conscious. The coping strategies are illustrated by a model. A plea is made for a holistic, biopsychosocial treatment plan for these sufferers.
authors.affiliation: Psychologisches Institut, Universität Zürich.
authors.forename: E A
authors.initials: EA
authors.lastname: Rufener
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D004920:Erythropoiesis; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010787:Photosensitivity Disorders / Q000523:psychology; D011164:Porphyrias / Q000235:genetics / Q000523:psychology*; D011166:Porphyrins / Q000097:blood*; D011524:Protoporphyrins / Q000097:blood*; D012803:Sick Role; D012871:Skin Diseases / Q000235:genetics / Q000523:psychology*; D012917:Social Adjustment
chemical_list: D011166:Porphyrins; D011524:Protoporphyrins
vernacular_title: Erythropoetische Protoporhyrie: Krankheitsbewältigung aus biopsychosozialer Sicht.