{"id":28004,"date":"2020-09-29T15:28:02","date_gmt":"2020-09-29T19:28:02","guid":{"rendered":"https:\/\/nephcure.org\/6429-2\/"},"modified":"2024-05-01T16:35:57","modified_gmt":"2024-05-01T20:35:57","slug":"6429-2","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/6429-2\/","title":{"rendered":"El presidente del equipo de caminata de Illinois ayuda a construir una comunidad para enfermedades renales raras"},"content":{"rendered":"<p><em>Como madre paciente en Illinois, Cheryl LaBanco est\u00e1 constantemente creando conciencia sobre el s\u00edndrome nefr\u00f3tico y la GEFS. Le apasiona conectarse con otras familias locales y ser un sistema de apoyo para quienes luchan por lo mismo. <img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-6432\" src=\"https:\/\/nephcure.org\/wp-content\/uploads\/2024\/04\/20190918_093147-scaled.jpg\" alt=\"\" width=\"300\" height=\"533\" \/>enfermedad como su hija. Cheryl es la <a href=\"https:\/\/nephcure.org\/es\/join-your-local-community\/illinois\/\">L\u00edder de promoci\u00f3n y presidenta del equipo de caminata local en su regi\u00f3n<\/a>. Conozca m\u00e1s sobre la historia de su familia y sus esfuerzos por crear un sentido de comunidad en torno a esta rara enfermedad.<\/em><\/p>\n<h4><em>Cu\u00e9ntenos sobre la conexi\u00f3n de su familia con el s\u00edndrome nefr\u00f3tico y la GEFS.<\/em><\/h4>\n<p>A mi hija Nora le diagnosticaron s\u00edndrome nefr\u00f3tico el 31 de enero de 2017 cuando ten\u00eda tres a\u00f1os. Ten\u00edamos la esperanza de que ella respondiera a los medicamentos y eventualmente superara esta condici\u00f3n. Despu\u00e9s de varias semanas, todav\u00eda no respond\u00eda al tratamiento de primera l\u00ednea, por lo que se realiz\u00f3 una biopsia para ver si ten\u00eda una forma m\u00e1s grave, llamada <a href=\"https:\/\/nephcure.org\/es\/livingwithkidneydisease\/understanding-glomerular-disease\/understanding-fsgs\/\">FSGS (glomeruloesclerosis focal y segmentaria)<\/a>. La GEFS deja cicatrices en los ri\u00f1ones y puede provocar insuficiencia renal. Desafortunadamente los resultados de la biopsia confirmaron el diagn\u00f3stico de GEFS. No superar\u00e1 esta enfermedad y tendr\u00e1 que vivir con ella el resto de su vida. Actualmente no existe cura y tratar la enfermedad puede ser dif\u00edcil y duro. Las altas dosis de esteroides dejaron a Nora con cataratas, pero afortunadamente, Nora ha tenido suerte en general. Pudo alcanzar una remisi\u00f3n combinando un inmunosupresor y un medicamento para la presi\u00f3n arterial. Ella est\u00e1 prosperando y le gusta tocar el piano, el s\u00f3ftbol y el f\u00fatbol.<\/p>\n<h4><em>\u00bfC\u00f3mo se involucr\u00f3 por primera vez con NephCure?<\/em><\/h4>\n<p>Encontramos NephCure a trav\u00e9s de una investigaci\u00f3n despu\u00e9s del diagn\u00f3stico inicial de Nora. Kelly Helm de NephCure ha sido un gran recurso de informaci\u00f3n y apoyo. Estamos muy agradecidos por la comunidad NephCure.<\/p>\n<h4><em>\u00bfCu\u00e1les son los objetivos que se est\u00e1 fijando para usted o su regi\u00f3n? <\/em><\/h4>\n<p>Nuestros objetivos son involucrar a m\u00e1s personas y crear conciencia. Queremos que nuestra hija sepa que nunca lucha sola y que siempre tiene un equipo que la apoya. Esperamos continuar apoyando a nuevas familias y brindando recursos.<\/p>\n<h4><em><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-6431\" src=\"https:\/\/nephcure.org\/wp-content\/uploads\/2024\/04\/20180916_101649-scaled.jpg\" alt=\"\" width=\"400\" height=\"225\" \/>\u00bfC\u00f3mo tendr\u00e1n estos objetivos un impacto en la concienciaci\u00f3n sobre las enfermedades?<\/em><\/h4>\n<p>Muchas personas se han acercado a nosotros simplemente buscando S\u00edndrome Nefr\u00f3tico o FSGS. Cuanto m\u00e1s difundimos nuestra historia, m\u00e1s gente sabr\u00e1 sobre la enfermedad y sobre los recursos disponibles.<\/p>\n<h4><em>\u00bfCu\u00e1l es la parte favorita de tu caminata que te perdiste al ser virtual este a\u00f1o?<\/em><\/h4>\n<p>La parte favorita de la caminata para nuestra familia es cuando las otras familias locales comparten sus historias. Algunos est\u00e1n contentos, otros no tanto, pero todos ayudan a crear un sentido de comunidad y prop\u00f3sito y nos ayudan a concentrarnos en recaudar fondos para, con suerte, curar alg\u00fan d\u00eda el s\u00edndrome nefr\u00f3tico y la GEFS. Despu\u00e9s del diagn\u00f3stico de Nora nos sentimos muy solos, por lo que es bueno tener otras familias con quienes conectarnos.<\/p>\n<h4><em>\u00bfQu\u00e9 le sorprendi\u00f3 de participar en NephCure? <a href=\"https:\/\/give.nephcure.org\/OntheMoveFall\">Desaf\u00edo virtual En Movimiento<\/a>?<\/em><\/h4>\n<figure id=\"attachment_6430\" aria-describedby=\"caption-attachment-6430\" style=\"width: 290px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6430\" src=\"https:\/\/nephcure.org\/wp-content\/uploads\/2024\/04\/20200925_151057-scaled.jpg\" alt=\"\" width=\"300\" height=\"520\" \/><figcaption id=\"caption-attachment-6430\" class=\"wp-caption-text\">La hija de Cheryl, Nora, que sufre de GEFS.<\/figcaption><\/figure>\n<p>La capacidad de seguir teniendo un equipo detr\u00e1s de nosotros apoy\u00e1ndonos fue incre\u00edble. Normalmente tenemos una buena participaci\u00f3n en la caminata, por lo que no est\u00e1bamos seguros de qu\u00e9 esperar al pasar a lo virtual. Todav\u00eda estamos tratando de encontrar maneras de <a href=\"https:\/\/give.nephcure.org\/OntheMoveFall\">recaudar fondos para NephCure<\/a>, incluso sin nuestro evento en persona.<\/p>\n<h4><em>\u00bfPor qu\u00e9 es tan importante para usted involucrarse con NephCure y nuestra misi\u00f3n?<\/em><\/h4>\n<p>Para nosotros es importante participar con NephCure porque es una de las \u00fanicas organizaciones que trabaja para encontrar tratamientos y una cura para el s\u00edndrome nefr\u00f3tico y la GEFS. Queremos que nuestra hija reciba un tratamiento seguro y eficaz hasta que alg\u00fan d\u00eda haya una cura. Tambi\u00e9n lo encontramos <a href=\"https:\/\/nephcure.org\/es\/join-your-local-community\/illinois\/\">importante estar involucrado con NephCure<\/a> porque nos ha permitido mostrarles a nuestras hijas que ante la adversidad se puede optar por sentarse al margen y esperar o trabajar junto con otros que tienen el mismo objetivo de hacer del mundo un lugar mejor.<\/p>\n<p><em>Para encontrar su comunidad NephCure local y obtener m\u00e1s informaci\u00f3n sobre oportunidades de voluntariado, haga clic en <a href=\"https:\/\/nephcure.org\/es\/join-your-local-community\/\">aqu\u00ed<\/a>.\u00a0<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>Como madre paciente en Illinois, Cheryl LaBanco est\u00e1 constantemente creando conciencia sobre el s\u00edndrome nefr\u00f3tico y la GEFS. Le apasiona conectarse con otras familias locales y ser un apoyo... <a title=\"El presidente del equipo de caminata de Illinois ayuda a construir una comunidad para enfermedades renales raras\" class=\"read-more\" href=\"https:\/\/nephcure.org\/es\/6429-2\/\" aria-label=\"Leer m\u00e1s sobre El presidente del equipo de caminata de Illinois ayuda a construir una comunidad para enfermedades renales raras\">Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":28007,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[354],"tags":[],"disease-category":[],"resource-type":[260],"treatment-option":[],"hf_cat_post":[],"class_list":["post-28004","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","resource-type-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.1 (Yoast SEO v28.1) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Illinois Walk Team Chair Helps Build Community for Rare Kidney Diseases - NephCure<\/title>\n<meta name=\"description\" content=\"As a patient parent in Illinois, Cheryl LaBanco, is constantly raising awareness for Nephrotic Syndrome and FSGS. She is passionate about connecting with - Read more about Illinois Walk Team Chair Helps Build Community for Rare Kidney Diseases on NephCure.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/nephcure.org\/es\/6429-2\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Illinois Walk Team Chair Helps Build Community for Rare Kidney Diseases\" \/>\n<meta property=\"og:description\" content=\"As a patient parent in Illinois, Cheryl LaBanco, is constantly raising awareness for Nephrotic Syndrome and FSGS. 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