{"id":81127,"date":"2024-06-21T13:11:07","date_gmt":"2024-06-21T16:11:07","guid":{"rendered":"https:\/\/satsaider.com\/inicio\/?p=81127"},"modified":"2024-06-21T13:11:09","modified_gmt":"2024-06-21T16:11:09","slug":"dia-mundial-de-la-ela-un-testimonio-de-valor-lucha-y-conciencia","status":"publish","type":"post","link":"https:\/\/entrerios.satsaid.com.ar\/inicio\/dia-mundial-de-la-ela-un-testimonio-de-valor-lucha-y-conciencia\/","title":{"rendered":"D\u00eda Mundial de la ELA: Un testimonio de valor, lucha y conciencia"},"content":{"rendered":"\n<p class=\"eplus-wrapper wp-block-paragraph\"><strong>Horacio Su\u00e1rez<\/strong>&nbsp;es el secretario de Prensa de la Seccional Entre R\u00edos del SATSAID y, con el objetivo de visibilizarla y generar conciencia, nos cuenta su experiencia con esta enfermedad, que afecta a dos de cada 100.000 habitantes.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Quiero citar a la campa\u00f1a de la televisi\u00f3n, quien cre\u00f3 conciencia en la ciudad con los baldazos de agua y hielo, y a muchos enfermos qu\u00e9 conoc\u00ed.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Dese\u00f3 compartir lo que transito d\u00eda a d\u00eda con mi salud. Aunque contar cada detalle requerir\u00eda varias p\u00e1ginas, narrar\u00e9 brevemente sobre esta compleja enfermedad que me habita.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Para empezar,&nbsp;<strong>quiero presentarles la ELA, Esclerosis Lateral Amiotr\u00f3fica, una enfermedad neurodegenerativa que causa debilidad muscular progresiva y afecta el control de los m\u00fasculos necesarios para moverse, hablar, comer e incluso respirar.<\/strong>&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Todo comenz\u00f3 hace aproximadamente siete a\u00f1os (2015), con dificultades para comer y tragar. Despu\u00e9s de consultar a un dentista sin respuestas claras y buscar en Internet, empec\u00e9 a notar problemas al articular palabras (disartria). La verg\u00fcenza me llev\u00f3 a callar y solo presenciar, aunque segu\u00ed con mis actividades en el SATSAID Entre R\u00edos, una parte valiosa de mi vida.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">La enfermedad se manifest\u00f3 claramente a fines de 2016, con p\u00e9rdida de peso y problemas para caminar. Buscar ayuda profesional, incentivado por mi se\u00f1ora y mi hijo, me llev\u00f3 a recorrer varias ciudades para llegar a un diagn\u00f3stico. Las dificultades para hablar me causaron gran estr\u00e9s, depresi\u00f3n y aislamiento durante casi dos a\u00f1os.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Con la ayuda de mi obra social,<strong>&nbsp;TV Salud<\/strong>, consegu\u00ed atenci\u00f3n en Buenos Aires. Despu\u00e9s de m\u00faltiples ex\u00e1menes, el diagn\u00f3stico fue Miastenia gravis. Comenzaron tratamientos e internaciones, aunque sin un diagn\u00f3stico definitivo y con mejoras leves.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Estar en casa fue un gran desaf\u00edo para m\u00ed y mi familia. Llev\u00f3 m\u00e1s de tres a\u00f1os con internaci\u00f3n domiciliaria y, a pesar de las limitaciones, contin\u00fao trabajando con la ayuda del sector ocular TOBBI y una notebook actualizada, disfrutando de paseos en familia y apoyado incondicionalmente por ellos y mis compa\u00f1eros de trabajo, quienes me pasan novedades para difundir las actividades de nuestro gremio.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Como mensaje final,&nbsp;<strong>a quienes la padecen, les deseo mucha fe y esperanza, hasta encontrar la cura.&nbsp;<\/strong><strong>Y a quienes no, les pido que se comprometan con esta lucha, para que la comunidad sepa que la ELA existe<\/strong>,&nbsp;<strong>porque es necesario que el Estado y las instituciones de salud tomen cartas en el asunto<\/strong>, permitiendo acceso universal a tratamientos y diagn\u00f3sticos para mejorar la calidad de vida de quienes padecen esta enfermedad.&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Tuve la fortuna de contar con una buena obra social que me lo facilit\u00f3, pero s\u00e9 que no es as\u00ed en todos los casos.&nbsp;<strong>Parte de mi lucha es conseguir equidad en la atenci\u00f3n y diagn\u00f3stico temprano de la ELA, para reducir los da\u00f1os f\u00edsicos y psicol\u00f3gicos.<\/strong>&nbsp;<\/p>\n\n\n\n<p class=\"eplus-wrapper wp-block-paragraph\">Finalmente, agradezco especialmente a mi gremio de televisi\u00f3n de Entre R\u00edos, a mi familia, y al grupo de profesionales y enfermer\u00eda que son la parte principal para sobrellevar esta dura enfermedad y quienes est\u00e1n a diario conmigo.&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Horacio Su\u00e1rez&nbsp;es el secretario de Prensa de la Seccional Entre R\u00edos del SATSAID y, con el objetivo de visibilizarla y generar conciencia, nos cuenta su experiencia con esta enfermedad, que afecta a dos de cada 100.000 habitantes.&nbsp; Quiero citar a &#8230; <\/p>\n<p class=\"read-more-container\"><a title=\"D\u00eda Mundial de la ELA: Un testimonio de valor, lucha y conciencia\" class=\"read-more button\" href=\"https:\/\/entrerios.satsaid.com.ar\/inicio\/dia-mundial-de-la-ela-un-testimonio-de-valor-lucha-y-conciencia\/#more-81127\">Ver nota completa<span class=\"screen-reader-text\">D\u00eda Mundial de la ELA: Un testimonio de valor, lucha y conciencia<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":81128,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"rop_custom_images_group":[],"rop_custom_messages_group":[],"rop_publish_now":"initial","rop_publish_now_accounts":{"twitter_261979730_261979730":""},"rop_publish_now_history":[],"rop_publish_now_status":"pending","advgb_blocks_editor_width":"","advgb_blocks_columns_visual_guide":"","editor_plus_copied_stylings":"{}","footnotes":""},"categories":[10,60],"tags":[],"class_list":["post-81127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-prensa","category-tv-salud","masonry-post","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>D\u00eda Mundial de la ELA: Un testimonio de valor, lucha y conciencia - SATSAID Entre R\u00edos<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/entrerios.satsaid.com.ar\/inicio\/dia-mundial-de-la-ela-un-testimonio-de-valor-lucha-y-conciencia\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00eda Mundial de la ELA: Un testimonio de valor, lucha y conciencia - SATSAID Entre R\u00edos\" \/>\n<meta property=\"og:description\" content=\"Horacio Su\u00e1rez&nbsp;es el secretario de Prensa de la Seccional Entre R\u00edos del SATSAID y, con el objetivo de visibilizarla y generar conciencia, nos cuenta su experiencia con esta enfermedad, que afecta a dos de cada 100.000 habitantes.&nbsp; Quiero citar a ... 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