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2025-03-05
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info:eu-repo/semantics/openAccess
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Resumen
Las enfermedades raras suponen una condición de anormalidad que viven muchas personas, anormalidad en la salud, a veces también en su aspecto físico, y en la manera en la que se ven obligados a enfrentar una enfermedad poco conocida, incluso por el personal médico. Esta condición de vida, esa doble rareza, en una sociedad aparentemente diversa, pero que adolece de estigmatizar al diferente, debe condicionar inevitablemente las prácticas sociales de estas personas y de su entorno. Este trabajo analiza cómo se producen estas prácticas. Veremos las conexiones sociales de la enfermedad rara, no sólo con el entorno más cercano, sino con los profesionales de la medicina y las asociaciones.
El fenotipo de algunas enfermedades raras, el diagnóstico -a veces tardío-, la incertidumbre, la incomprensión y las redes de apoyo son cuestiones que se exponen y analizan en este trabajo, desde la disciplina antropológica.
Rare diseases represent an abnormal condition that many people experience, an abnormality in health, sometimes also in their physical appearance, and in the way in which they are forced to face a disease that is little known, even by medical staff. This condition of life, this double rarity, in an apparently diverse society, but which suffers from stigmatizing the different, must inevitably condition the social practices of these people and their environment. This work analyzes how these practices are produced. We will see the social connections of the rare disease, not only with the closest environment, but also with medical experts and associations. The phenotype of some rare diseases, the diagnosis - sometimes late -, uncertainty, misunderstanding and support networks are issues that are exposed and analyzed in this work, from the anthropological discipline.
Rare diseases represent an abnormal condition that many people experience, an abnormality in health, sometimes also in their physical appearance, and in the way in which they are forced to face a disease that is little known, even by medical staff. This condition of life, this double rarity, in an apparently diverse society, but which suffers from stigmatizing the different, must inevitably condition the social practices of these people and their environment. This work analyzes how these practices are produced. We will see the social connections of the rare disease, not only with the closest environment, but also with medical experts and associations. The phenotype of some rare diseases, the diagnosis - sometimes late -, uncertainty, misunderstanding and support networks are issues that are exposed and analyzed in this work, from the anthropological discipline.
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Categorías UNESCO
Palabras clave
Enfermedades raras, Estigma social, Incertidumbre, Diagnóstico, Rare diseases, Stigma social, Uncertainty, Diagnosis
Citación
Medina Pérez, Ana María. Trabajo de Fin de Máster: «Vivir en el margen y la incertidumbre. Una etnografía de las enfermedades raras». Universidad Nacional de Educación a Distancia (UNED), 2025
Centro
Facultad de Filosofía
Departamento
Antropología Social y Cultural
Grupo de investigación
Cultura urbana