Everyday life and mastocytosis from a patient perspective —a qualitative study

ConclusionPatients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients ’ self‐perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care.Relevance for clinical practiceThe focus of counselling should not only be on the disease itself, but also on living life with the disease.
Source: Journal of Clinical Nursing - Category: Nursing Authors: Tags: ORIGINAL ARTICLE Source Type: research