When rare becomes common : a teajectory in the world of adrenoleukodystrophy

• Autor(a) principal: Souza, Bruna Aline Stoél de
• Data de Publicação: 2020
• Outros Autores: Carniel, Fagner
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Temáticas (Campinas. Online)
• Texto Completo: https://econtents.bc.unicamp.br/inpec/index.php/tematicas/article/view/14169
• topic: Antropología de la Salud; Anormalidades; Estudios sobre Discapacidad; Enfermedades Raras; Políticas de Salud; Antropologia da saúde; Anormalidades; Estudos da deficiência; Doenças raras; Políticas de saúde; Anthropology of Health; Abnormalities; Disability Studies; Rare Diseases; Health Policies

The article deals with the story of a mother who lived the experience of having a child whit adrenoleukodystrophy in the middle of the process of emergence of an institution for the management of people with rare diseases in Brazil. The research design starts from the way rare diseases are constituted as a public management problem at the national and international levels. Then, through documentary sources, discuss with Lindacir Souza Franco relationships and respect the commitment, from the search for a conclusive diagnosis and possible tests until the death of her son Gabriel, in February 2017. Finally, discuss how the ways in which Lindacir managed to reframe his “personal tragedy” in a militancy that aimed to transform a “rarity” of this son’s illness into something increasingly “common” to build alliances with associations and health professionals who are unaware of it. The intention, therefore, is not to carry out a genealogy of the disease from the postulation of new changes identified as “rare” but offers empirical elements that expand the debate about the challenges involved in the struggles for recognition and for rights to health.