{"id":1532,"date":"2025-09-09T03:28:06","date_gmt":"2025-09-09T09:28:06","guid":{"rendered":"https:\/\/somos-hermanos.mx\/?p=1532"},"modified":"2025-09-09T03:28:06","modified_gmt":"2025-09-09T09:28:06","slug":"ameh-apoyo-a-pacientes-con-huntington","status":"publish","type":"post","link":"https:\/\/somos-hermanos.mx\/index.php\/2025\/09\/09\/ameh-apoyo-a-pacientes-con-huntington\/","title":{"rendered":"AMEH: Apoyo a pacientes con Huntington"},"content":{"rendered":"<p>M\u00fasica, canto, risas, gritos, hurras y porras fue lo que vivieron, sintieron y disfrutaron, familiares, pacientes, amigos y personal de la Asociaci\u00f3n Mexicana de la Enfermedad de Huntington IAP, que se dieron cita para gozar del <strong>Festival de M\u00fasica<\/strong> en el que hubo puro derroche de talento.<\/p>\n<p>Ah\u00ed y en medio de la algarab\u00eda, <strong>Donaji Toledo Betanzos, directora de la IAP se\u00f1al\u00f3 que a lo largo del a\u00f1o realizan este tipo de eventos para hacer visible al Huntington,<\/strong> la cual es una enfermedad hereditaria neurodegenerativa, incapacitante y progresiva para el cual no hay tratamiento curativo ni preventivo.<\/p>\n<p>\u201cEs una enfermedad que va alterando la capacidad cognitiva, se presentan alteraciones psiqui\u00e1tricas como: depresi\u00f3n, delirio, ansiedad, paranoia, y el s\u00edntoma m\u00e1s visible son los movimientos involuntarios, se puede empezar con tics en cara y manos y al ser progresiva y discapacitante, en un lapso de 20 a\u00f1os, la persona termina completamente discapacitada.<\/p>\n<p>Toledo asegur\u00f3 que afecta igual a hombres y mujeres de todos los grupos sociales y todas las razas. \u201cCada hijo\u00a0de un individuo portador del gen tiene el 50% de posibilidades de heredar el gen y por consiguiente de desarrollar la enfermedad\u201d.<\/p>\n<p>La directora de la Asociaci\u00f3n Mexicana de la Enfermedad de Huntington, indic\u00f3 que <strong>los s\u00edntomas comienzan a manifestarse entre los 35 y 50 a\u00f1os de edad, <\/strong>aunque hay casos infantiles, juveniles y en la tercera edad.<\/p>\n<p>Una persona con Huntington puede vivir hasta 20 a\u00f1os enfermo, terminando completamente discapacitado.<\/p>\n<p>Por ello, este tipo de eventos que se realizan al a\u00f1o tienen la finalidad de afianzar v\u00ednculos entre nuestros usuarios y sus familiares e invitar a m\u00e1s personas para que se sumen y contribuyan a la inclusi\u00f3n de nuestros pacientes y a difundir lo que es la enfermedad de Huntington y a sensibilizar de esta manera humana a toda la comunidad.<\/p>\n<p><strong>Apoyo a los pacientes y familiares<\/strong><\/p>\n<p>Donaji Toledo informo que la asociaci\u00f3n los apoya con: Atenci\u00f3n terap\u00e9utica no farmacol\u00f3gica, es decir con terapia ocupacional, del lenguaje, f\u00edsica, as\u00ed como apoyo a familiares con platicas informativas, asesor\u00edas individuales, y de esta manera puedan afrontar la enfermedad de su familiar.<\/p>\n<p>Asimismo, <strong>se hacen visitas a domicilio para aquellas personas que no pueden asistir a la organizaci\u00f3n, o bien se brinda atenci\u00f3n de manera virtual.<\/strong> Les ayudamos con medicamentos, camas de hospital, ba\u00f1os port\u00e1tiles y sillas de ruedas a fin de contribuir al bienestar del paciente y a su calidad de vida, concluy\u00f3 Donaji Toledo Betanzos.<\/p>\n<p>En el Festival de M\u00fasica los asistentes disfrutaron de las canciones que interpret\u00f3 el coro de pacientes de la asociaci\u00f3n, as\u00ed como el grupo Ensamble Cantares y las canciones de Mart\u00edn, usuario que interpret\u00f3 las canciones de Jos\u00e9 Jos\u00e9.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-1541 size-full\" src=\"https:\/\/somos-hermanos.mx\/wp-content\/uploads\/2025\/09\/hun1.jpg\" alt=\"\" width=\"806\" height=\"607\" srcset=\"https:\/\/somos-hermanos.mx\/wp-content\/uploads\/2025\/09\/hun1.jpg 806w, https:\/\/somos-hermanos.mx\/wp-content\/uploads\/2025\/09\/hun1-300x226.jpg 300w, https:\/\/somos-hermanos.mx\/wp-content\/uploads\/2025\/09\/hun1-768x578.jpg 768w\" sizes=\"auto, (max-width: 806px) 100vw, 806px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>M\u00fasica, canto, risas, gritos, hurras y porras fue lo que vivieron, sintieron y disfrutaron, familiares, pacientes, amigos y personal de la Asociaci\u00f3n Mexicana de la Enfermedad de Huntington IAP, que se dieron cita para gozar del Festival de M\u00fasica en el que hubo puro derroche de talento. Ah\u00ed y en medio de la algarab\u00eda, Donaji [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":1540,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[911,916,915,913,912,914,918,917],"class_list":["post-1532","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias","tag-asociacion-mexicana-de-la-enfermedad-de-huntington","tag-atencion-terapeutica","tag-capacidad-cognitiva","tag-enfermedad-hereditaria","tag-festival-de-musica","tag-no-hay-tratamiento-curativo","tag-platicas-informativas","tag-terapia-ocupacional"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>AMEH: Apoyo a pacientes con Huntington - Historias que inspiran...<\/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:\/\/somos-hermanos.mx\/index.php\/2025\/09\/09\/ameh-apoyo-a-pacientes-con-huntington\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"AMEH: Apoyo a pacientes con Huntington - Historias que inspiran...\" \/>\n<meta property=\"og:description\" content=\"M\u00fasica, canto, risas, gritos, hurras y porras fue lo que vivieron, sintieron y disfrutaron, familiares, pacientes, amigos y personal de la Asociaci\u00f3n Mexicana de la Enfermedad de Huntington IAP, que se dieron cita para gozar del Festival de M\u00fasica en el que hubo puro derroche de talento. 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