“Tenho epidermólise bolhosa”: uma análise compreensiva

Abstract

Epidermolysis Bullosa (EB) is a skin disorder in which several structural protein mutations occur, characterized by the appearance of blisters. The main types are Simple EB, Junctional EB, Dystrophic EB, Kindle and more than 35 subtypes of EB. Social stigma and multiple changes in the skin as well as low life expectancy are limiting factors for EB, requiring more effective care and preventive actions to minimize the effects of this condition. The stoma therapist must assist these people in a holistic way, seeking to understand the weaknesses and emotional difficulties presented by the person with EB. It is not just about taking care of serious and delicate injuries, but caring for a person with a serious illness still without definitive cure. The patient needs an individualized, broad and articulated approach for the effectiveness and success of the treatment. The objective of this study was to understand the perceptions of the person with EB regarding the challenges of care, emotional, social and cultural aspects. This is a qualitative study using Laurence Bardin's Content Analysis as a reference for analysis. The sample was for convenience. Five people composed the corpus of this work. Data collection took place through an open interview, containing only one question: “Could you tell me about your day to day, as a person with Epidermolysis Bullosa?” A questionnaire containing four questions about social and clinical data of the interviewees was also applied. From the analysis of the interviews, five categories emerged: Knowledge of the disease; Treatment; Implications of the disease; Everyday life; Resilience. These were broken down into subcategories. It is concluded that the daily life of a person with EB is very difficult, but the support derived from networks and the family can favor the quality of life. The health team's lack of knowledge at the time of diagnosis at birth was recurrent in all interviews. Prejudice emerged more than once, including situations of bullying at school. The inefficiency of the state was also observed, on some occasions, making it difficult for people with EB to have full access to treatment. The stoma therapist nurse needs to have a holistic look regarding these people whose assistance transcends basic care, which in this work was re-signified.