{"id":55356,"date":"2024-10-20T20:31:48","date_gmt":"2024-10-21T00:31:48","guid":{"rendered":"https:\/\/noti-america.com\/site\/principal\/?p=55356"},"modified":"2024-10-20T20:31:48","modified_gmt":"2024-10-21T00:31:48","slug":"colombia-se-une-a-la-conmemoracion-del-dia-mundial-de-shua","status":"publish","type":"post","link":"https:\/\/noti-america.com\/site\/principal\/2024\/10\/20\/colombia-se-une-a-la-conmemoracion-del-dia-mundial-de-shua\/","title":{"rendered":"Colombia se une a la conmemoraci\u00f3n del D\u00eda Mundial de SHUa"},"content":{"rendered":"<p>NOTI-AMERICA | COLOMBIA<\/p>\n<p>Este a\u00f1o en la Carrera 24S, que se realizar\u00e1 hoy domingo 20 de octubre, en el Parque Sim\u00f3n Bol\u00edvar, los pacientes con S\u00edndrome Hemol\u00edtico Ur\u00e9mico at\u00edpico, SHUa, provenientes de Bogot\u00e1 y 10 departamentos del centro del pa\u00eds, se reunir\u00e1n convocados por Fundaper, para conmemorar el d\u00eda mundial de esta patolog\u00eda.<\/p>\n<p>Ser\u00e1 un <strong>espacio para la diversi\u00f3n y el conocimiento, en medio de una \u201cvilla ol\u00edmpica\u201d <\/strong>que estar\u00e1 abierta al p\u00fablico, a los interesados en el tema y sobre todo a esas familias que crean tener, en medio de sus familias, pacientes con esta patolog\u00eda. Para la prensa ser\u00e1 un privilegio compartir con pacientes y familias en ese momento especial de integraci\u00f3n y de educaci\u00f3n.<\/p>\n<p><em>\u201cEs un espacio de integraci\u00f3n, en el cual disfrutaremos con actividades l\u00fadicas, mientras ampliamos nuestros conocimientos, tendremos competencia entre pacientes y familias. Con premios individuales y grupos familiares. Aprenderemos mucho m\u00e1s sobre esta enfermedad y recibiremos tips para mejorar nuestra calidad de vida\u201d, <\/em>precis\u00f3 Glor\u00eda Mar\u00eda Cely, directora de Fundaper, asociaci\u00f3n de pacientes que apoya a quienes est\u00e1n diagnosticados con SHUa en Colombia.<\/p>\n<p>En la actividad participar\u00e1n pacientes de Bogot\u00e1, Meta, Casanare, Tolima, Huila, Cundinamarca, Risaralda, Armenia y Caldas, con sus amigos y familiares. En la Carrera 24S este a\u00f1o, los asistentes disfrutar\u00e1n y compartir\u00e1n jugando: f\u00fatbol, golfito, baloncesto, tenis y equitaci\u00f3n, y ser\u00e1n premiados en la \u201cVilla Ol\u00edmpica\u201d al tiempo que recuerdan las carreras de los pacientes y sus familias por salvar sus vidas.<\/p>\n<h4>Sobre la patolog\u00eda y su presencia en Colombia<\/h4>\n<p><strong>\u00a0<\/strong>Se denominan enfermedades hu\u00e9rfanas a aquellas que se presentan en un determinado n\u00famero de habitantes comparado con la poblaci\u00f3n general; afectan a 1 por cada 5.000 personas. Comprenden las enfermedades raras, ultra hu\u00e9rfanas y olvidadas. Entre el 70 y 80% de estas enfermedades son de origen gen\u00e9tico. Se consideran cr\u00f3nicas, debilitantes, graves y lesionan cualquier \u00f3rgano o sistema.<\/p>\n<p><em>\u201cCon certeza en Colombia, hay varios casos, pero esta enfermedad como es ultra rara, es rara entre las raras, y por eso es de dif\u00edcil diagn\u00f3stico, lo que en muchos casos conlleva a la muerte. En esta patolog\u00eda en particular el <strong>ser atendido por m\u00e9dicos expertos es un asunto de vida o muerte<\/strong>. Los nefr\u00f3logos y los hemat\u00f3logos son los especialistas indicados, porque el ri\u00f1\u00f3n y la sangre se afectan en el 100% de los casos. Por eso, invitamos a las familias que tengan diagn\u00f3stico o sospecha de tener en su seno un paciente con esta patolog\u00eda, a comunicarse con nuestra Fundaci\u00f3n, donde con gusto los asesoramos y apoyamos. Pueden contactarnos al cel: 3173706519 o visitar nuestra web <\/em><a href=\"http:\/\/www.fundaper.org\/\"><em>www.fundaper.org<\/em><\/a><em>\u201d, <\/em>se\u00f1ala Gloria Mar\u00eda Cely.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>NOTI-AMERICA | COLOMBIA Este a\u00f1o en la Carrera 24S, que se realizar\u00e1 hoy domingo 20 de octubre, en el Parque Sim\u00f3n Bol\u00edvar, los pacientes con S\u00edndrome Hemol\u00edtico Ur\u00e9mico at\u00edpico, SHUa, provenientes de Bogot\u00e1 y&#46;&#46;&#46;<\/p>\n","protected":false},"author":135,"featured_media":55357,"comment_status":"","ping_status":"open","sticky":false,"template":"","format":"image","meta":{"_acf_changed":false,"rop_custom_images_group":[],"rop_custom_messages_group":[],"rop_publish_now":"initial","rop_publish_now_accounts":{"facebook_10219548024599422_1632221337088128":"","twitter_242054905_242054905":""},"rop_publish_now_history":[],"rop_publish_now_status":"pending","footnotes":""},"categories":[48],"tags":[],"class_list":["post-55356","post","type-post","status-publish","format-image","has-post-thumbnail","hentry","category-salud","post_format-post-format-image"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v24.9 (Yoast SEO v27.2) - 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