{"id":11152,"date":"2024-03-01T06:11:11","date_gmt":"2024-03-01T06:11:11","guid":{"rendered":"https:\/\/expresorgv.online\/home\/?p=11152"},"modified":"2024-03-01T06:11:12","modified_gmt":"2024-03-01T06:11:12","slug":"viven-25-millones-de-mexicanos-con-enfermedades-raras-sin-diagnostico-unam","status":"publish","type":"post","link":"https:\/\/expresorgv.online\/home\/blog\/2024\/03\/01\/viven-25-millones-de-mexicanos-con-enfermedades-raras-sin-diagnostico-unam\/","title":{"rendered":"Viven 2,5 millones de mexicanos con enfermedades raras sin diagnostico: UNAM"},"content":{"rendered":"\n<p>Al menos 2,5 millones de mexicanos podr\u00edan tener un padecimiento poco com\u00fan pero a\u00fan <strong>no est\u00e1n diagnosticados<\/strong>, advirti\u00f3 este jueves Belkis Monsalve, especialista y gerente m\u00e9dica de Hematolog\u00eda y Salud Femenina en Astellas Pharma, con motivo del D\u00eda Mundial de las Enfermedades Raras.<\/p>\n\n\n\n<p>Con ello, en M\u00e9xico hay <strong>8 millones de personas con enfermedades raras<\/strong>, seg\u00fan c\u00e1lculos de la Universidad Nacional Aut\u00f3noma de M\u00e9xico (UNAM).<\/p>\n\n\n\n<p>\u201cEs importante tener un censo actualizado porque eso nos permite poder actuar con el tratamiento a tiempo, pero para poder tener acceso a ese tipo de medicamentos, sobre todo a nivel p\u00fablico, <strong>se necesita saber cu\u00e1ntos pacientes padecen ciertas enfermedades\u201d<\/strong>, se\u00f1al\u00f3 a EFE Monsalve, quien tambi\u00e9n es m\u00e9dica cirujana y pediatra.<\/p>\n\n\n\n<p>En el marco del D\u00eda Mundial de las Enfermedades Raras, este jueves, la experta se\u00f1al\u00f3 que no existe una definici\u00f3n internacional un\u00e1nime sobre el umbral estad\u00edstico bajo el que un padecimiento se considera raro, pero en M\u00e9xico se considera as\u00ed cuando afecta a no m\u00e1s de<strong> cinco personas por cada 10,000 habitantes.<\/strong><\/p>\n\n\n\n<p>Otra caracter\u00edstica es que son males cr\u00f3nicos, graves, incapacitantes y progresivos.<\/p>\n\n\n\n<p>Explic\u00f3, adem\u00e1s, que en el mundo se han identificado m\u00e1s de <strong>8.000 enfermedades raras,<\/strong> pero \u201clamentablemente son muy pocas las que pueden ser identificadas f\u00e1cilmente y tambi\u00e9n son muy pocas las que tienen acceso al tratamiento\u201d.<\/p>\n\n\n\n<p>En M\u00e9xico se reconocen un total de 23 enfermedades raras, entre las que destacan el s\u00edndrome de Turner, espina b\u00edfida, fibrosis qu\u00edstica, enfermedad de Pompe, hemofilia, histiocitosis, hipotiroidismo cong\u00e9nito, fenilcetonuria, galactosemia, hiperplasia suprarrenal cong\u00e9nita y homocistinuria.<\/p>\n\n\n\n<p>Adem\u00e1s, dijo, <strong>entre el 85 % y 90 % de las enfermedades raras son serias<\/strong>, de gran impacto psicol\u00f3gico y emocional, ponen en peligro la vida, y est\u00e1n presentes a cualquier edad.<\/p>\n\n\n\n<p>Ante ello, Monsalve consider\u00f3 importante generar conciencia sobre estos males, pues es fundamental garantizar un acceso equitativo a la salud, que incluya un diagn\u00f3stico temprano y tratamientos que mejoren la calidad de vida.<\/p>\n\n\n\n<p>\u201cPor eso es la importancia de hacer conciencia para que puedan ser identificadas a cualquier nivel de atenci\u00f3n de salud y puedan ser tratadas\u201d, detall\u00f3.<\/p>\n\n\n\n<p>Dijo que muchas veces los pacientes viven sin diagn\u00f3stico lo que los lleva a <strong>fallecer por la enfermedad.<\/strong><\/p>\n\n\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"https:\/\/i0.wp.com\/editorial.aristeguinoticias.com\/wp-content\/uploads\/2023\/04\/cientificos-identifican-mecanismo-por-que-salen-canas-envejecer-ciencia-escuela-medicina-grossman-universidad-nueva-york-21042023-700x438.jpg?resize=640%2C400&#038;ssl=1\" alt=\"\" data-recalc-dims=\"1\" \/><\/figure>\n\n\n\n<p id=\"caption-attachment-1282966\"><\/p>\n\n\n\n<p>\u201cSon pacientes que tienen una c<strong>alidad de vida muy deteriorada<\/strong>, a los que se les acortan sus a\u00f1os de vida por no estar diagnosticados en el momento preciso y no ser tratados adecuadamente\u201d, mencion\u00f3.<\/p>\n\n\n\n<p>Se\u00f1al\u00f3 que, aunque en 2021 existi\u00f3 una iniciativa para hacer un censo de enfermedades raras y facilitar la atenci\u00f3n de la salud en M\u00e9xico, no hubo continuidad, aunque asociaciones de pacientes se han organizado para buscar que mejore la situaci\u00f3n.<\/p>\n\n\n\n<p>Asimismo, resalt\u00f3 el <strong>reto del acceso a tratamientos.<\/strong><\/p>\n\n\n\n<p><strong>\u201c<\/strong>A veces los tratamientos m\u00e1s nuevos que hay en Estados Unidos tienen que pasar hasta cinco a\u00f1os para ser aprobados en M\u00e9xico y una vez aprobados tambi\u00e9n hay que garantizar el tratamiento al paciente\u201d, concluy\u00f3.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Al menos 2,5 millones de mexicanos podr\u00edan tener un padecimiento poco com\u00fan pero a\u00fan no est\u00e1n diagnosticados, advirti\u00f3 este jueves Belkis Monsalve, especialista y gerente m\u00e9dica de Hematolog\u00eda y Salud Femenina en Astellas Pharma, con motivo del D\u00eda Mundial de las Enfermedades Raras. Con ello, en M\u00e9xico hay 8 millones de personas con enfermedades raras, [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":11137,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[],"class_list":["post-11152","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nacional"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Viven 2,5 millones de mexicanos con enfermedades raras sin diagnostico: UNAM -<\/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:\/\/expresorgv.online\/home\/blog\/2024\/03\/01\/viven-25-millones-de-mexicanos-con-enfermedades-raras-sin-diagnostico-unam\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Viven 2,5 millones de mexicanos con enfermedades raras sin diagnostico: UNAM\" \/>\n<meta property=\"og:description\" content=\"Al menos 2,5 millones de mexicanos podr\u00edan tener un padecimiento poco com\u00fan pero a\u00fan no est\u00e1n diagnosticados, advirti\u00f3 este jueves Belkis Monsalve, especialista y gerente m\u00e9dica de Hematolog\u00eda y Salud Femenina en Astellas Pharma, con motivo del D\u00eda Mundial de las Enfermedades Raras. 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