Women's experience of suffering repeated severe attacks of acute intermittent porphyria

Abstract

The aim of this study was to elucidate the experiences of the women with severe, recurrent attacks of porphyria and how they coped with them successfully. A total of five women were interviewed and were encouraged to describe their experiences. Thematic content analysis was used to interpret the significance of their narratives. The result demonstrated that the women's experience was of living in deepest darkness with inexpressible pain, both physical and mental. Coming into contact with health care had its good and bad points. It was often difficult to cope with life during severe periods of the disease. The process of maturation towards a more positive existence seemed to follow a pattern of accepting the disease, continuing the fight until it was finally possible to discover a pattern and meaning in life that suited the individual concerned.