Las ER tienen una importante repercusión en la sociedad. Desde el punto de vista social, estas condiciones pueden llevar a la exclusión, el estigma y el autoestigma debido a la falta de comprensión, visibilidad, información y concienciación.
La noción de enfermedad rara parte de una concepción epidemiológica, ya que son enfermedades que padecen un numero reducido de personas. No obstante, aquí nos centramos en la construcción social del significado de enfermedad rara.
- El concepto de enfermedad rara surge de la construcción de una serialidad de personas, un colectivo social cuyos miembros están unidos (activa o pasivamente) por unos objetivos que orientan sus acciones o como resultado de las consecuencias materiales de las acciones de los otros. Aunque una enfermedad rara no se parezca a otra desde el punto de vista médico, desde el punto de vista social comparten la misma orfandad en cuanto al olvido que sufren las personas que las padecen. Al no constituir un grupo de presión grande de forma separada, el concepto de enfermedad rara surge para aglutinar las demandas de las personas cuyo tratamiento y diagnóstico, al ser minoritario, es olvidado por su escasa rentabilidad en la industria médica y farmacéutica.
- Es necesario abordar la problemática de las enfermedades raras a partir de un modelo ecológico social. Esto quiere decir que las enfermedades raras que experimentan directamente los enfermos, también pueden alterar la vida de las familias y de su entorno más directo, su felicidad, calidad de vida, estabilidad emocional. De este modo, la sociedad en su conjunto se ve afectada por esta problemática, pasando de ser un problema individual a un hecho social cuyo abordaje debe ser considerado por el conjunto de actores sociales e instituciones.
- En el ámbito educativo, las personas afectadas, así como sus familias, a menudo enfrentan desafíos específicos, como las barreras de participación, aprendizaje en los entornos educativos y la necesidad de facilitadores actitudinales, formación y comprensión por parte de educadores y compañeros.
- En la dimensión de las relaciones laborales, se presentan desafíos tanto para las empresas como para los trabajadores. Las personas con enfermedades raras pueden necesitar adaptaciones y facilitadores en el entorno laboral, como horarios flexibles, cambios en las responsabilidades o ajustes en el entorno laboral para garantizar su bienestar y rendimiento. Por otro lado, el estigma en torno a las enfermedades raras puede reflejarse en discriminación laboral. La falta de concienciación puede llevar a conflictos laborales y prejuicios entre compañeros. Algunas ER pueden no estar completamente cubiertas por los sistemas tradicionales. El acceso a beneficios laborales y seguros de salud puede ser un desafío en este sentido al no estar tipificadas y reconocidas.
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