Família, emoções e biosocialidade: a mobilização de pessoas com uma doença rara no Rio Grande do Norte - a síndrome de Berardinelli

Abstract

This thesis addresses the social mobilization in the Sertão do Seridó region of Rio Grande do Norte, as well as the “biosociality” relationships in different spaces, including websites, of people living with a very rare and stigmatizing disease, the Berardinelli syndrome. Responsible for prolonging and improving the quality of life of people affected by the disease, the mobilization emerged through the activism of the mothers of children who were born with the genetic disease (known regionally as the disease of the lean) and the partnerships that were established between them and geneticists. With the founding of na NGO – ASPOSBERN-, associativism among families produced contexts of “biosociality” structured by different levels of proximity and dialogue between subjects and specialized scientific knowledge, but also by emotions and moralities. The main objective of this paper is to analyze anthropologically the forms of social and political organization around this rare disease in Rio Grande do Norte - but which also involves people from other states - in favor of treatments, biosocial recognition, rights and citizenship, considering activism of mothers and other agents and social sectors. The field research that enabled its production was based on the ethnographic method and was systematized through participant observation of the collective moments of the association, informal conversations and open and semi-structured interviews, made with people with Berardinelli syndrome, their families, medical researchers and public agents. In addition, they were analysed the dynamics established in group and in a page focused on the syndrome on the social network Facebook.