{"id":156,"date":"2023-04-06T16:51:00","date_gmt":"2023-04-06T16:51:00","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/"},"modified":"2023-08-09T17:23:11","modified_gmt":"2023-08-09T17:23:11","slug":"2023-4-4-ultima-receptora-jessica-una-superviviente-de-germinoma-se-enfrenta-a-complicaciones-de-sodio-mas-adelante-en-su-vida","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/","title":{"rendered":"Jessica, superviviente de un germinoma, se enfrenta a las complicaciones del sodio en etapas posteriores de su vida"},"content":{"rendered":"Los supervivientes de tumores hipot\u00e1lamo-hipofisarios pagan un alto precio por sobrevivir. Muchos, a lo largo de su vida, tendr\u00e1n problemas m\u00e9dicos que apuntan al tumor, o sufrir\u00e1n una progresi\u00f3n de los s\u00edntomas. Por ejemplo, a Jessica, que ahora tiene 38 a\u00f1os, se le diagnostic\u00f3 un germinoma cerebral a los 8 a\u00f1os y se trat\u00f3 con extirpaci\u00f3n quir\u00fargica y radiaci\u00f3n. A ra\u00edz del tratamiento, desarroll\u00f3 hipopituitarismo, p\u00e9rdida completa de la funci\u00f3n hipofisaria y deficiencia central de arginina vasopresina, una enfermedad que antes se denominaba diabetes ins\u00edpida. <\/span><\/p>\n\n\n\n\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">El a\u00f1o pasado, Jessica sufri\u00f3 dos infartos cerebrales, que agravaron una zona del cerebro ya comprometida. Ha tenido m\u00faltiples complicaciones con niveles de sodio en sangre por debajo de 120 o por encima de 160 (el intervalo est\u00e1ndar es de 135-145), lo que ha provocado numerosas y prolongadas hospitalizaciones, seg\u00fan su endocrin\u00f3logo. Los niveles de sodio fuera de rango pueden causar convulsiones, coma y pueden ser fatales si no se tratan con medicaci\u00f3n y gesti\u00f3n de fluidos. El problema es que la FDA no ha aprobado ning\u00fan m\u00e9todo para medir el sodio fuera de un laboratorio u hospital. La \u00fanica opci\u00f3n para realizar pruebas en casa es utilizar un analizador de sangre port\u00e1til de grado hospitalario que pueda realizar un panel metab\u00f3lico b\u00e1sico que incluya pruebas de sodio y electrolitos.&nbsp;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Jessica vive en Summerville, Carolina del Sur, con su madre, Betty, y le gustan los rompecabezas, los juegos en su tel\u00e9fono y viajar, sobre todo para ver a sus dos sobrinos. Su mayor reto, aparte de las recientes hospitalizaciones y los problemas de sodio, es la memoria a corto plazo, que, seg\u00fan Betty, empeora cada a\u00f1o.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Tanto el endocrin\u00f3logo de Jessica como su madre han abogado fervientemente por conseguir un analizador de sangre port\u00e1til que ayude a gestionar mejor los problemas de sodio. Gracias al apoyo de nuestros donantes, la Fundaci\u00f3n Raymond A. Wood entreg\u00f3 un dispositivo a la familia esta semana.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\"Jess sigue viviendo conmigo y este \u00faltimo a\u00f1o ha sido muy duro para los dos\", cuenta Betty.  \"No podemos agradecerles lo suficiente que nos hayan dado la oportunidad de utilizar el equipo. Esperemos que esto nos ayude a mantenerla fuera del hospital\".<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Estos analizadores de sangre port\u00e1tiles se utilizan de forma no autorizada para tratar esta afecci\u00f3n, por lo que los seguros no suelen cubrir los costes. Sin embargo, disponer de la capacidad de analizar el sodio en casa ha demostrado ser eficaz para mitigar las largas estancias en el hospital. Un an\u00e1lisis r\u00e1pido permite al cuidador y al m\u00e9dico realizar cambios en los l\u00edquidos y la medicaci\u00f3n que pueden salvar vidas. RAWF, en colaboraci\u00f3n con socios del Hospital Infantil de Filadelfia y Giner, Inc. est\u00e1 trabajando para hacer realidad el an\u00e1lisis de sodio a domicilio apoyando el desarrollo de un medidor de sodio. M\u00e1s informaci\u00f3n sobre este proyecto.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">La historia de Jessica es un ejemplo de las complicaciones a largo plazo a las que se enfrentan muchos supervivientes de estos tumores. En la Fundaci\u00f3n Raymond A. Wood trabajamos para apoyar a los supervivientes y a sus familias en cada paso del camino, desde el diagn\u00f3stico hasta la supervivencia. Por favor, apoye nuestra misi\u00f3n para permitirnos proporcionar estos dispositivos a las familias para gestionar mejor el cuidado de sus seres queridos.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Los supervivientes de tumores hipot\u00e1lamo-hipofisarios pagan un alto precio por sobrevivir. Muchos, a lo largo de su vida, ... <a title=\"Jessica, superviviente de un germinoma, se enfrenta a las complicaciones del sodio en etapas posteriores de su vida\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/\" aria-label=\"Leer m\u00e1s sobre Jessica, superviviente de un germinoma, se enfrenta a las complicaciones del sodio en el futuro\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":157,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-156","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blood-analyzer-recipient","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Jessica, a Germinoma Survivor, Faces Sodium Complications Later in Life - Raymond A. Wood Foundation<\/title>\n<meta name=\"description\" content=\"Jessica, a craniopharyngioma survivor, receives blood analyzer from Raymond A. Wood Foundation to manage arginine vasopressin deficiency.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2023\/04\/06\/2023-4-4-ultima-receptora-jessica-una-superviviente-de-germinoma-se-enfrenta-a-complicaciones-de-sodio-mas-adelante-en-su-vida\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Jessica, a Germinoma Survivor, Faces Sodium Complications Later in Life - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Jessica, a craniopharyngioma survivor, receives blood analyzer from Raymond A. 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