{"id":33,"date":"2019-03-17T12:34:51","date_gmt":"2019-03-17T12:34:51","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2019\/03\/17\/2019-3-17-pituitary-brain-tumor-day-a-retrospective\/"},"modified":"2023-08-01T19:31:01","modified_gmt":"2023-08-01T19:31:01","slug":"2019-3-17-dia-del-tumor-cerebral-hipofisario-una-retrospectiva","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2019\/03\/17\/2019-3-17-pituitary-brain-tumor-day-a-retrospective\/","title":{"rendered":"D\u00eda del tumor cerebral hipofisario - Una retrospectiva"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p style=\"white-space:pre-wrap;\">Para aquellos que han seguido nuestra historia desde el diagn\u00f3stico de Alex, me habr\u00e1n o\u00eddo decir una y otra vez que hay bendiciones en este viaje. Ayer fue un ejemplo de una de esas bendiciones.<\/p>\n<p style=\"white-space:pre-wrap;\">El D\u00eda del Tumor Cerebral Hipofisario en el Hospital Infantil de Filadelfia (CHOP) fue una idea que surgi\u00f3 hace casi un a\u00f1o en una cita rutinaria de seguimiento endocrinol\u00f3gico de Alex, donde tuvimos el placer de conocer al Dr. Craig Alter, el jefe de la cl\u00ednica de neuroendocrinolog\u00eda. La Dra. Karla Leavens, endocrin\u00f3loga de Alex, hizo la presentaci\u00f3n, tras haberle hablado al Dr. Alter del trabajo que est\u00e1bamos haciendo con la fundaci\u00f3n. Empezamos a charlar y \u00e9l mencion\u00f3 que estaba celebrando una conferencia para otros m\u00e9dicos sobre todos los problemas endocrinos que suelen derivarse de los tumores cerebrales hipofisarios como el craneofaringioma, el tumor de Alex. <\/p>\n<p style=\"white-space:pre-wrap;\">Inmediatamente, le pregunt\u00e9 si pod\u00edan venir los padres. Me respondi\u00f3 que tal vez podr\u00eda organizar un evento orientado a los padres. Ser\u00eda incre\u00edble: pasar un d\u00eda aprendiendo e intercambiando informaci\u00f3n con estos m\u00e9dicos y conociendo a otras familias ser\u00eda una gran oportunidad. Las enfermedades de nuestros hijos son tan raras que, que yo sepa, no existe ning\u00fan evento para padres que trate todos estos temas. <\/p>\n<p style=\"white-space:pre-wrap;\">As\u00ed que el Dr. Alter prometi\u00f3 ponerse en contacto y seguir hablando, y unas semanas m\u00e1s tarde comenz\u00f3 la planificaci\u00f3n. Invit\u00f3 a otra defensora de las madres, Catherine Chiang, y a otra endocrin\u00f3loga extremadamente dedicada, la Dra. Shana McCormack y, con la ayuda de Catrice Butler, de la Oficina de Educaci\u00f3n M\u00e9dica Continua (CME) del CHOP, el evento se organiz\u00f3 en menos de un a\u00f1o.&nbsp; <\/p>\n<p style=\"white-space:pre-wrap;\">Ayer, mientras observaba en la sala los rostros que hab\u00edan viajado desde el estado de Washington, California, Texas, Michigan, Arkansas, Florida, Virginia, Maryland, Nueva Jersey y, por supuesto, Pensilvania, sent\u00ed una profunda gratitud por la realizaci\u00f3n de este d\u00eda y por estos m\u00e9dicos apasionados por el trabajo que hacen y compasivos con las situaciones raras y dif\u00edciles de sus pacientes y nuestras luchas como padres para tratar estas enfermedades.<\/p>\n<p style=\"white-space:pre-wrap;\">Los tumores cerebrales hipofisarios pueden ser de naturaleza cancerosa o no cancerosa. Por lo general, se puede sobrevivir a ellos, pero en lo que respecta a su ubicaci\u00f3n, se encuentran entre estructuras muy delicadas e importantes para el funcionamiento general del organismo: la hip\u00f3fisis y el hipot\u00e1lamo. Los da\u00f1os en estas estructuras afectan a todas las partes del cuerpo, incluyendo el hambre y la sed, el metabolismo, la regulaci\u00f3n de los fluidos corporales, el crecimiento, la regulaci\u00f3n de la temperatura, la liberaci\u00f3n de cortisol para la respuesta al estr\u00e9s, el comportamiento, el sue\u00f1o, la pubertad, la fertilidad y el v\u00ednculo social. Gestionar estos problemas de forma eficaz para lograr un equilibrio adecuado y una calidad de vida aceptable es una tarea abrumadora. <\/p>\n<p style=\"white-space:pre-wrap;\">La endocrinolog\u00eda es una especialidad compleja que requiere que el m\u00e9dico sea muy pr\u00e1ctico con los pacientes, especialmente pedi\u00e1tricos, no s\u00f3lo en las citas de seguimiento rutinarias. No son m\u00e9dicos que te atienden quince minutos, facturan al seguro y se van. Las consultas de endocrinolog\u00eda para pacientes panhipopituitarios pueden durar una hora u horas a veces y siempre hay datos que analizar, an\u00e1lisis que revisar, gr\u00e1ficos de crecimiento y peso que explicar, medicaciones que ajustar y emociones que tratar de pacientes y padres. Siempre hay conversaciones que mantener entre una cita y otra y padres preocupados que preguntan asustados por cosas que parecen \"no estar bien\". <\/p>\n<p style=\"white-space:pre-wrap;\">Ayer, estos m\u00e9dicos dedicaron su tiempo a este evento, respondiendo amablemente a todas y cada una de las preguntas sin ning\u00fan rastro de superioridad o ego. Estos m\u00e9dicos son inteligentes en el sentido de que reconocen que muchos de nosotros, los padres, tenemos un caso de uno en sus casos de muchos y nos dedicamos a averiguar todo lo que hay que saber sobre c\u00f3mo mejorar la vida de nuestros hijos. No tenemos t\u00edtulos de medicina, pero leemos interminables revistas e informes m\u00e9dicos y tratamos de dar sentido a los datos. Nos convertimos en expertos en nuestro \"\u00fanico paciente\" y adquirimos conocimientos a trav\u00e9s de nuestra red de padres en Internet. Estos m\u00e9dicos vieron el valor de aprovechar todo eso. Era un aut\u00e9ntico esp\u00edritu de colaboraci\u00f3n. <\/p>\n<p style=\"white-space:pre-wrap;\">Ayer se trataron muchos, muchos temas a un alto nivel ante un p\u00fablico de personas que se encontraban en distintos momentos de este viaje. Algunos eran tan nuevos que su hijo estaba ingresado, apenas unas semanas despu\u00e9s de la resecci\u00f3n de un tumor cerebral. Algunos son nuestros \"veteranos\", como Eugenie Hsu, que es nuestra defensora de la oxitocina, una de las hormonas que actualmente no se est\u00e1 sustituyendo en nuestros hijos pero que se est\u00e1 estudiando en el CHOP. Marci Serota, otra madre defensora, dietista titulada y autora de <em>Hambrientos de soluciones<\/em>El Dr. G. H., m\u00e9dico del CHOP, realiz\u00f3 una presentaci\u00f3n con puntos clave sobre la gesti\u00f3n de la nutrici\u00f3n de los ni\u00f1os con obesidad hipotal\u00e1mica, uno de los efectos secundarios m\u00e1s dif\u00edciles de un tumor cerebral hipofisario. Los m\u00e9dicos del CHOP hablaron sobre el sue\u00f1o, el comportamiento, la dosificaci\u00f3n del estr\u00e9s, el tratamiento de la diabetes ins\u00edpida, el proceso de inducci\u00f3n de la pubertad y las implicaciones psicosociales de los tumores cerebrales tanto en los pacientes como en las familias. Creo que todo el mundo se llev\u00f3 algo, ya fueran nuevos conocimientos o un nuevo amigo con el que compartir la vida en este camino. Es muy valioso relacionarse con otras familias.<\/p>\n<p style=\"white-space:pre-wrap;\">Cabe destacar que se cuid\u00f3 hasta el m\u00e1s m\u00ednimo detalle, incluida la elecci\u00f3n de un men\u00fa de desayuno y almuerzo que funcionara dentro de las directrices diet\u00e9ticas establecidas por Marci Serota en nutrici\u00f3n para pacientes con HO. Nada de postres azucarados ni boller\u00eda como la que se suele ver en los congresos.<\/p>\n<p style=\"white-space:pre-wrap;\">Un enorme agradecimiento al Dr. Craig Alter, la Dra. Shana McCormack, Catrice Butler, Catherine Chiang y la familia Chiang, Marci Serota, Eugenie Hsu por trabajar en la promoci\u00f3n del evento para los grupos de padres, los oradores de la sesi\u00f3n, Ellen Waters, miembro de la junta RAWF que vino a ayudar, Hospital de Ni\u00f1os de Filadelfia, las familias que hicieron el viaje para ser parte de este d\u00eda y los donantes RAWF y simpatizantes que ayudaron a hacer este d\u00eda posible. Esperamos que el a\u00f1o que viene sea a\u00fan mejor.<\/p>\n<\/div>\n<div class=\"sqs-gallery-container  sqs-gallery-block-slider  sqs-gallery-block-show-meta  block-animation-none  clear\"\n\n\n><\/p>\n<div class=\"sqs-gallery\">\n<p>              <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1552825468312-1OQ7AEUVM4S4IWS4AWPN\/IMG-2648.JPG\" alt=\"IMG-2648.JPG\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1552825468312-1OQ7AEUVM4S4IWS4AWPN\/IMG-2648.JPG\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1552825468312-1OQ7AEUVM4S4IWS4AWPN\/IMG-2648.JPG\" data-image-dimensions=\"960x720\" data-image-focal-point=\"0.5,0.5\" alt=\"IMG-2648.JPG\" data-load=\"false\" data-image-id=\"5c8e3c7b971a1808b48c252a\" data-type=\"image\" \/><\/p>\n<p>              <noscript><img 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data-image-id=\"5c8e3e5be4966b4eaee146c8\" data-type=\"image\" \/><\/p><\/div>\n<\/div>\n<div class=\"sqs-html-content\">\n<p style=\"white-space:pre-wrap;\">\n<\/div>","protected":false},"excerpt":{"rendered":"<p style=\"white-space:pre-wrap;\">Para aquellos que han seguido nuestra historia desde el diagn\u00f3stico de Alex, me habr\u00e1n o\u00eddo decir una y otra vez que hay bendiciones en este viaje. A veces, en los d\u00edas dif\u00edciles, es un recordatorio para m\u00ed misma para superar ese d\u00eda, como una afirmaci\u00f3n, y a veces, cuando lo digo, es una expresi\u00f3n de alegr\u00eda. Ayer hubo muchos momentos de alegr\u00eda. <\/p>","protected":false},"author":6,"featured_media":34,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8,1],"tags":[],"class_list":["post-33","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","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 v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pituitary Brain Tumor Day - A Retrospective - 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\/2019\/03\/17\/2019-3-17-dia-del-tumor-cerebral-hipofisario-una-retrospectiva\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pituitary Brain Tumor Day - A Retrospective - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"For those out there that have followed our story since Alex\u2019s diagnosis, you might have heard me say over and over again that there are blessings in this journey. Sometimes, on the hard days, it is a reminder to myself to get through that day, like an affirmation, and sometimes, when I say it, it\u2019s a a joyful expression. Yesterday, there were many moments of joy.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2019\/03\/17\/2019-3-17-dia-del-tumor-cerebral-hipofisario-una-retrospectiva\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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