Hermenêutica e narrativa: a experiência de m?es de crian?as com epidermólise bolhosa congênita

摘要

The paper analyses the narrative of three mothers of children affected by Epidermolysis Bullosa (EB), adopting an approach inspired by the phenomenological hermeneutics of P. Ricoeur. Epidermolysis Bullosa is a severe and rare disease affecting mostly the skin and mucosae, producing deep skin troubles and suffering to the children affected and the family members involved in caring for him or her. Experience of suffering, stigma, fear of contagion, relation with health professionals, particularly medical doctors, care practices, are some of the issues that have been considered in the paper. The exchange of experiences promoted by social networks can improve the quality of life of EB patients as well as providing social support to family members. Moreover, the improvement of this movement can stimulate health professionals and health managers to adopt more effective and equitable public policies.