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NARRATIVAS SOBRE A SÍNDROME PÓS-PÓLIO EM ASSOCIAÇÕES DE PACIENTES DO BRASIL E DA ESPANHA NOS MEIOS DIGITAIS
Narrativas sobre el síndrome post-polio en asociaciones de enfermos en Brasil y España en medios digitales
Associações de pacientes
Meios digitais
Ativismo
Doença rara
Asociaciones de enfermos
Medios digitales
Activismo
Enfermedad rara
Alternative title
Postpolio syndrome narratives in Brazilian and Spanish patient associations in digital mediaNarrativas sobre el síndrome post-polio en asociaciones de enfermos en Brasil y España en medios digitales
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Abstract in Portuguese
A Síndrome Pós-poliomielite (SPP) é uma patologia que afeta pessoas que tiveram pólio muitos anos depois da doença aguda. É considerada uma doença crônica e rara e seus sintomas caracterizam-se por fraqueza muscular, fadiga intensa e dores musculares e articulares, entre outros sintomas. O objetivo deste artigo é compreender que narrativas sobre a doença são divulgadas pelas associações de pacientes com Síndrome Pós-pólio e seus usos nos meios digitais. Analisaremos duas organizações de pacientes, uma do Brasil e uma da Espanha, a saber: a Associação Brasileira de Síndrome Pós-poliomielite (Abraspp), fundada em 2004 em São Paulo, Brasil, e a Asociación Afectados de Polio y Síndrome Post-polio, fundada em 2000 em Madrid, Espanha. Em nosso estudo qualitativo, analisamos as páginas institucionais de ambas as associações que se encontram em suportes digitais com acesso aberto. Tanto a Abraspp quanto a Asociación Afectados de Polio y Sindrome Post-polio sinalizam como papel principal de sua associação o caráter de divulgadoras de informações sobre a síndrome, tomando para o coletivo a co-elaboração de políticas inclusivas e defesa de direitos de pessoas com deficiência. Foi observado que nas fontes digitais analisadas das associações a SPP não é encampada como síndrome rara.
Abstract
Post-polio syndrome (PPS) is a pathology that affects people who have had polio many years after the acute illness. It is considered a chronic and rare disease and its symptoms are characterized by muscle weakness, intense fatigue and muscle and joint pain, among other symptoms. The objective of this article is to understand which narratives about the disease are disseminated by associations of patients with Post-polio Syndrome and their uses in digital media. We will analyze two patient organizations, one from Brazil and one from Spain, namely: the Brazilian Association of Post-polio Syndrome (Abraspp), founded in 2004 in São Paulo, Brazil, and the Asociación Afectados de Polio y Síndrome Post-polio, Founded in 2000 in Madrid, Spain. In our qualitative study, we analyzed the institutional pages of both associations that are available on digital media with open access. Both Abraspp and the Asociación Afectados de Polio y Sindrome Post-polio highlight the main role of their association as disseminating information about the syndrome, taking on the collective role in co-elaborating inclusive policies and defending the rights of people with disabilities. . It was observed that in the analyzed digital sources of associations, PPS is not considered a rare syndrome.
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Post-polio syndrome (PPS) is a pathology that affects people who suffer from polio for many years after acute illness. It is considered a chronic and rare condition and its symptoms are characterized by muscle weakness, intense fatigue and muscle and joint pain, among other symptoms. The objective of this article is to understand that narratives about the disease are disclosed by the associations of patients with Post-Polio Syndrome and their uses in the most digital ways. We will analyze two patient organizations, both in Brazil and in Spain, namely: the Brazilian Association of Post-polio Syndrome (Abraspp), founded in 2004 in São Paulo, Brazil, and the Association Affected by Polio and Post-polio Syndrome, founded in 2000 in Madrid, Spain. In our qualitative study, we analyze the institutional pages of both associations that are in digital supports with open access. Both Abraspp and the Association Affected by Polio and Post-polio Syndrome play the main role of their association in disseminating information about the syndrome, taking the co-elaboration of inclusive policies and defense of the rights of people with disabilities for the collective. . It was observed that the digital sources analyzed by the associations with SPP are not classified as a rare syndrome.
Keywords in Portuguese
Síndrome Pós-PólioAssociações de pacientes
Meios digitais
Ativismo
Doença rara
Keywords in Spanish
Síndrome Post-PolioAsociaciones de enfermos
Medios digitales
Activismo
Enfermedad rara
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