{"id":53484,"date":"2022-02-28T14:44:24","date_gmt":"2022-02-28T13:44:24","guid":{"rendered":"https:\/\/exaudi.org\/?p=53484"},"modified":"2022-02-28T14:48:08","modified_gmt":"2022-02-28T13:48:08","slug":"afrontar-enfermedades-raras-pandemia-egoismo","status":"publish","type":"post","link":"https:\/\/exaudi.org\/es\/afrontar-enfermedades-raras-pandemia-egoismo\/","title":{"rendered":"Afrontar las enfermedades raras erradicando \u201cla pandemia del ego\u00edsmo\u201d"},"content":{"rendered":"
\n

En su mensaje por la XV Jornada Mundial de las Enfermedades Raras, celebrada hoy 28 de febrero de 2022, el cardenal Michael Czerny<\/a>, prefecto en funciones del Dicasterio para el Servicio del Desarrollo Humano Integral<\/a>, ha se\u00f1alado que el objetivo de afrontar este tipo de dolencias \u201cs\u00f3lo podr\u00e1 alcanzarse si se erradica, en primer lugar, la pandemia del ego\u00edsmo individual y social para promover una cultura de aceptaci\u00f3n, solidaridad y bien com\u00fan\u201d.<\/p>\n<\/div>\n

Impacto para toda la familia<\/h2>\n

Despu\u00e9s de recordar que son alrededor de 300 millones de personas las que padecen alguna enfermedad rara en el mundo, el arzobispo checoslovaco indica que \u201cel impacto negativo de vivir con una enfermedad rara se siente a lo largo de toda la vida y en todos los aspectos de la vida de los afectados y sus familias\u201d.<\/p>\n

\u201cEn los pa\u00edses de bajos ingresos, este impacto negativo es a\u00fan mayor, ya que la escasez de recursos e inversiones en investigaci\u00f3n, diagn\u00f3stico y tratamientos excluye a los numerosos pacientes raros, pobres e indigentes del acceso al tratamiento\u201d, asegura en su escrito.<\/p>\n

Estigma social y falta de ingresos<\/h2>\n

Aparte de los problemas m\u00e9dicos, Czerny expresa que \u201clos pacientes con enfermedades raras se enfrentan a la discriminaci\u00f3n, el estigma e incluso la exclusi\u00f3n social\u201d. La inclusi\u00f3n en los sistemas educativos, contin\u00faa, es dif\u00edcil, pues \u201clos padres luchan por encontrar escuelas adecuadas dispuestas a aceptar a sus hijos con una enfermedad rara\u201d.<\/p>\n

Asimismo, informa de otra dificultad a\u00f1adida, el dinero: \u201cLos costes m\u00e1s elevados asociados al tratamiento, los cuidados continuos y las terapias de rehabilitaci\u00f3n les llevan a estar sujetos a un mayor riesgo de empobrecimiento y de aislamiento y exclusi\u00f3n social y econ\u00f3mica\u201d.<\/p>\n

\u201cMuchas de estas familias viven con menos ingresos porque acceder, mantener y volver a trabajar es un reto constante no s\u00f3lo para los afectados por una enfermedad rara, sino tambi\u00e9n para los seres queridos que los cuidan, generalmente mujeres, a menudo las principales cuidadoras; son ellas las que pagan el precio m\u00e1s alto de esta exclusi\u00f3n\u201d, concluye.<\/p>\n","protected":false},"excerpt":{"rendered":"

Mensaje del cardenal Czerny por la XV Jornada de Enfermedades Raras<\/p>\n","protected":false},"author":6,"featured_media":53498,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"_wpcom_ai_launchpad_first_post":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[138],"tags":[2409,487,1744,174,4953],"class_list":["post-53484","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dicasterios","tag-cardenal-michael-czerny","tag-dia-mundial-de-las-enfermedades-raras","tag-dicasterio-para-el-servicio-al-desarrollo-humano-integral","tag-mensaje","tag-trending-es"],"acf":[],"yoast_head":"\nAfrontar las enfermedades raras erradicando \u201cla pandemia del ego\u00edsmo\u201d<\/title>\n<meta name=\"description\" content=\"Czerny dice que afrontar las enfermedades raras \u201cs\u00f3lo podr\u00e1 alcanzarse si se erradica, en 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