{"id":9429,"date":"2024-10-01T07:14:00","date_gmt":"2024-10-01T07:14:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9429"},"modified":"2025-10-13T06:41:16","modified_gmt":"2025-10-13T06:41:16","slug":"arrojar-luz-sobre-los-retos-sanitarios-de-los-supervivientes-de-craneofaringioma","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/10\/01\/shedding-light-on-the-health-challenges-of-craniopharyngioma-survivors\/","title":{"rendered":"Aclarar los problemas de salud de los supervivientes de craneofaringioma"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Nuevos datos del registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios<\/h2>\n\n\n\n<p><a href=\"https:\/\/www.rawoodfoundation.org\/es\/craneofaringioma\/\">Craneofaringioma<\/a> (CP) se enfrentan a una serie de complejos problemas de salud que a menudo persisten mucho tiempo despu\u00e9s del tratamiento. En la Fundaci\u00f3n Raymond A. Wood estamos comprometidos con la mejora de las vidas de estos supervivientes mediante la recopilaci\u00f3n de datos cr\u00edticos a trav\u00e9s de nuestro registro de pacientes. Estos datos ofrecen informaci\u00f3n valiosa sobre los problemas de salud de los supervivientes de craneofaringioma y proporcionan una base para la tan necesaria investigaci\u00f3n sobre tratamientos e intervenciones. Estos son algunos de los principales resultados de nuestras recientes encuestas de registro, que reflejan las experiencias de la comunidad de supervivientes de par\u00e1lisis cerebral.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Principales retos sanitarios actuales para los supervivientes de PC<\/h3>\n\n\n\n<p>De los 108 supervivientes de craneofaringioma que respondieron a la encuesta sobre problemas de salud, la mayor\u00eda afirm\u00f3 tener que hacer frente a una gran variedad de problemas:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Hipotiroidismo:<\/strong> 86.1%<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.rawoodfoundation.org\/es\/sustitucion-de-hormonas-de-crecimiento\/\">Deficiencia de la hormona del crecimiento<\/a>:<\/strong> 78.7%<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.rawoodfoundation.org\/es\/control-de-la-diabetes-insipida\/\">Diabetes ins\u00edpida central<\/a>:<\/strong> 76.9%<\/li>\n\n\n\n<li><strong>Fatiga:<\/strong> 75.0%<\/li>\n\n\n\n<li><strong>Insuficiencia suprarrenal central:<\/strong> 75.0%<\/li>\n\n\n\n<li><strong>Deficiencia de hormonas sexuales:<\/strong> 72.2%<\/li>\n\n\n\n<li><strong>Obesidad:<\/strong> 61.1%<\/li>\n\n\n\n<li><strong>Regulaci\u00f3n anormal de la temperatura:<\/strong> 60.2%<\/li>\n\n\n\n<li><strong>Somnolencia diurna excesiva:<\/strong> 58.3%<\/li>\n\n\n\n<li><strong>Aumento de peso:<\/strong> 56.5%<\/li>\n\n\n\n<li><strong>D\u00e9ficits cognitivos:<\/strong> 55.6%<\/li>\n<\/ul>\n\n\n\n<p>Estos datos ofrecen una imagen clara de la carga que soportan a diario los supervivientes de CP. Los problemas m\u00e1s frecuentes, como el hipotiroidismo, la deficiencia de la hormona del crecimiento y la diabetes ins\u00edpida central, est\u00e1n directamente relacionados con el impacto del tumor en el eje hipotal\u00e1mico-hipofisario. M\u00e1s all\u00e1 de los desequilibrios hormonales, los supervivientes luchan contra la fatiga, los d\u00e9ficits cognitivos y los problemas relacionados con el peso, lo que a menudo convierte la vida cotidiana en un reto.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"576\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-576x1024.png\" alt=\"Gr\u00e1fico de barras que representa visualmente los problemas de salud de los supervivientes de PC.\" class=\"wp-image-9431\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-576x1024.png 576w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-169x300.png 169w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-768x1365.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-864x1536.png 864w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-7x12.png 7w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1.png 1080w\" sizes=\"(max-width: 576px) 100vw, 576px\" \/><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Obesidad hipotal\u00e1mica (HO) y su diagn\u00f3stico<\/h3>\n\n\n\n<p>Uno de los mayores retos a los que se enfrentan los supervivientes de un craneofaringioma es <a href=\"https:\/\/www.rawoodfoundation.org\/es\/obesidad-hipotalamica\/\">obesidad hipotal\u00e1mica<\/a> (HO), un trastorno metab\u00f3lico causado a menudo por da\u00f1os en el hipot\u00e1lamo durante la cirug\u00eda o el tratamiento. Seg\u00fan los datos de nuestro registro, 50% de los 100 supervivientes de PC encuestados afirmaron haber sido diagnosticados de obesidad hipotal\u00e1mica. Otros 36% dijeron que no hab\u00edan sido diagnosticados, mientras que 11% no estaban seguros de su diagn\u00f3stico.<\/p>\n\n\n\n<p>Curiosamente, s\u00f3lo 35% de los diagnosticados de HO declararon haber recibido un diagn\u00f3stico formal por escrito, mientras que la mayor\u00eda-79%-dijeron haber recibido un diagn\u00f3stico verbal. Esta laguna en la documentaci\u00f3n formal es significativa, ya que puede afectar a la calidad y continuidad de la atenci\u00f3n que reciben los supervivientes.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"1000\" height=\"1000\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO.jpg\" alt=\"Gr\u00e1fico de barras que muestra el diagn\u00f3stico de los pacientes con HO.\" class=\"wp-image-9435\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO.jpg 1000w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-300x300.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-150x150.jpg 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-768x768.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-12x12.jpg 12w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-330x330.jpg 330w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">La carga de medicaci\u00f3n de los supervivientes de par\u00e1lisis cerebral<\/h3>\n\n\n\n<p>La gesti\u00f3n de estos problemas de salud a menudo requiere que los supervivientes de craneofaringioma tomen m\u00faltiples medicamentos de forma continuada. Seg\u00fan nuestra encuesta a 82 participantes:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>94%<\/strong> est\u00e1n tomando un sustituto de la tiroides (T4)<\/li>\n\n\n\n<li><strong>85%<\/strong> est\u00e1n en tratamiento sustitutivo con corticosteroides<\/li>\n\n\n\n<li><strong>79%<\/strong> tomar hormonas antidiur\u00e9ticas de sustituci\u00f3n<\/li>\n\n\n\n<li><strong>63%<\/strong> est\u00e1n en tratamiento sustitutivo con hormona del crecimiento<\/li>\n\n\n\n<li><strong>60%<\/strong> tomar suplementos vitam\u00ednicos<\/li>\n\n\n\n<li><strong>59%<\/strong> est\u00e1n en tratamiento hormonal sustitutivo<\/li>\n<\/ul>\n\n\n\n<p>Por t\u00e9rmino medio, los supervivientes gestionan <strong>siete medicamentos diarios<\/strong>y algunos hasta <strong>15 medicamentos<\/strong> para tratar sus dolencias. Esta carga de medicaci\u00f3n pone de manifiesto la complejidad de sus necesidades sanitarias y la importancia de una atenci\u00f3n integral y coordinada.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"688\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-688x1024.jpg\" alt=\"Gr\u00e1fico de barras que muestra el uso de medicaci\u00f3n entre los supervivientes de par\u00e1lisis cerebral\" class=\"wp-image-9436\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-688x1024.jpg 688w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-201x300.jpg 201w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-768x1144.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-8x12.jpg 8w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG.jpg 1000w\" sizes=\"(max-width: 688px) 100vw, 688px\" \/><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Por qu\u00e9 son importantes estos datos<\/h3>\n\n\n\n<p>La informaci\u00f3n obtenida de nuestro registro de pacientes no son s\u00f3lo cifras: representan las experiencias vividas por los supervivientes de nuestra comunidad. A trav\u00e9s de <a href=\"https:\/\/www.rawoodfoundation.org\/es\/\" target=\"_blank\" rel=\"noreferrer noopener\">Iniciativas de apoyo a los pacientes con craneofaringioma<\/a>los supervivientes y los cuidadores pueden acceder a recursos esenciales, conocimientos compartidos y una red de apoyo que les ayude a superar estos complejos problemas de salud. Al comprender los problemas de salud m\u00e1s comunes y la carga que supone el tratamiento continuo, podemos abogar por una mejor atenci\u00f3n, una investigaci\u00f3n m\u00e1s espec\u00edfica y mejores protocolos de tratamiento que aborden las necesidades espec\u00edficas de los supervivientes de craneofaringioma.<\/p>\n\n\n\n<p>Necesitamos tu ayuda para seguir construyendo estos datos. La historia de cada persona a\u00f1ade una pieza crucial al rompecabezas. Al participar en el registro, no s\u00f3lo ayuda a esbozar una imagen m\u00e1s clara de lo que sufren los supervivientes de la par\u00e1lisis cerebral, sino que tambi\u00e9n contribuye a la investigaci\u00f3n que podr\u00eda conducir a mejores tratamientos y resultados en el futuro. <\/p>\n\n\n\n<h3 class=\"wp-block-heading\">C\u00f3mo ayudar<\/h3>\n\n\n\n<p>Si usted es un superviviente de craneofaringioma o un cuidador, le invitamos a <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hptumorregistry\/\">\u00fanase a nuestro registro de pacientes<\/a>. Sus experiencias son importantes y, al aportar sus datos, est\u00e1 ayudando a dar forma al futuro de la atenci\u00f3n a los supervivientes de PC. Juntos, podemos marcar la diferencia.<\/p>\n\n\n\n<p>Mantengamos la conversaci\u00f3n y asegur\u00e9monos de que se cuentan todas las historias.<\/p>","protected":false},"excerpt":{"rendered":"<p>Nuevos datos del registro de pacientes con tumores cerebrales hipotal\u00e1mico-hipofisarios Los supervivientes de craneofaringioma (CP) ... <a title=\"Aclarar los problemas de salud de los supervivientes de craneofaringioma\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2024\/10\/01\/shedding-light-on-the-health-challenges-of-craniopharyngioma-survivors\/\" aria-label=\"Leer m\u00e1s sobre Los retos sanitarios de los supervivientes de craneofaringioma\">Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":9439,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20],"tags":[],"class_list":["post-9429","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","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>Shedding Light on the Health Challenges of Craniopharyngioma Survivors - Raymond A. Wood Foundation<\/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:\/\/www.rawoodfoundation.org\/es\/2024\/10\/01\/arrojar-luz-sobre-los-retos-sanitarios-de-los-supervivientes-de-craneofaringioma\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Shedding Light on the Health Challenges of Craniopharyngioma Survivors - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"New Insights from the Hypothalamic-Pituitary Brain Tumor Patient Registry Craniopharyngioma (CP) survivors face a range ... Read more\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2024\/10\/01\/arrojar-luz-sobre-los-retos-sanitarios-de-los-supervivientes-de-craneofaringioma\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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