{"id":19222,"date":"2026-03-20T15:14:23","date_gmt":"2026-03-20T15:14:23","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=19222"},"modified":"2026-03-20T15:20:24","modified_gmt":"2026-03-20T15:20:24","slug":"esperanza-para-ho-la-espera-ha-terminado","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2026\/03\/20\/hope-for-ho-the-wait-is-over\/","title":{"rendered":"Esperanza para HO: La espera ha terminado"},"content":{"rendered":"<p><em>A la luz de la reciente aprobaci\u00f3n por la FDA de la setmelanotida para la obesidad hipotal\u00e1mica, este comentario ofrece una reflexi\u00f3n personal sobre lo que realmente significa este hito tan esperado. Para aquellos que han soportado a\u00f1os sin opciones, marca un profundo cambio: de sobrevivir a lo imposible a tener por fin una esperanza basada en la ciencia.<\/em><\/p>\n\n\n\n<p><em>por la doctora Eugenie Hsu<\/em><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>En 2011, mi hijo, que entonces ten\u00eda 8 a\u00f1os, fue sometido a una operaci\u00f3n de 14 horas para extirparle un craneofaringioma gigante, un tumor cerebral poco frecuente. A la operaci\u00f3n le siguieron seis semanas de hospitalizaci\u00f3n en la UCIP y muchos meses de rehabilitaci\u00f3n. Nos dijeron que tendr\u00eda que tomar hormonas de sustituci\u00f3n el resto de su vida.  Tambi\u00e9n nos dijeron que aproximadamente la mitad de los supervivientes de un craneofaringioma tendr\u00edan que hacer frente a una serie de s\u00edntomas mucho m\u00e1s complejos relacionados con un hipot\u00e1lamo da\u00f1ado, la diminuta estructura del cerebro que regula la homeostasis.<\/p>\n\n\n\n<p>Pronto qued\u00f3 claro que su hipot\u00e1lamo estaba da\u00f1ado. Carec\u00eda del mecanismo de la sed, lo que dificultaba enormemente el control del sodio en sangre, ya que no pod\u00eda confiar en la sed como se\u00f1al de deshidrataci\u00f3n. Sin embargo, all\u00ed donde no ten\u00eda sed, su hambre era abrumadora. Con un apetito incesante, s\u00f3lo pod\u00eda pensar en comida. Gan\u00f3 peso r\u00e1pidamente a pesar de la estricta supervisi\u00f3n y las dietas restrictivas, y la vigilancia constante se hizo insostenible. Tuvimos que cerrar la cocina para que dejara de comer continuamente. La falta de acceso le llev\u00f3 a robar comida, mentir sobre ello y sentir una profunda verg\u00fcenza cuando le pillaban. La vida social normal era imposible, y tem\u00edamos que nunca trabajara o pudiera quedarse solo sin supervisi\u00f3n. Vivir con obesidad hipotal\u00e1mica (HO) con hiperfagia (hambre incesante) se sent\u00eda como el infierno en la tierra.\u00a0<\/p>\n\n\n\n<p><strong>En aquel momento, no exist\u00eda ning\u00fan tratamiento aprobado para la HO.\u00a0<\/strong><\/p>\n\n\n\n<p>Pero no pod\u00eda concebir la espera interminable de un tratamiento mientras ve\u00eda c\u00f3mo HO le robaba la vida a mi hijo. Un poderoso catalizador; la desesperaci\u00f3n me llev\u00f3 a la literatura cient\u00edfica, en busca de cualquier indicio de posibilidad. Empec\u00e9 a leer sobre la oxitocina, un neurop\u00e9ptido conocido por su papel en el v\u00ednculo social, pero tambi\u00e9n implicado en la regulaci\u00f3n del apetito y el metabolismo. El hipot\u00e1lamo produce la oxitocina. Los da\u00f1os en el hipot\u00e1lamo la alteran. \u00bfPodr\u00eda la sustituci\u00f3n o el aumento de la oxitocina ayudar a recuperar parte de lo perdido? En apoyo de esta teor\u00eda, tambi\u00e9n me enter\u00e9 de que se estaba investigando la oxitocina como posible tratamiento de la hiperfagia en el s\u00edndrome de Prader Willi.<\/p>\n\n\n\n<p>Con la orientaci\u00f3n y supervisi\u00f3n de un m\u00e9dico dispuesto a recetar oxitocina y otro dispuesto a servir de asesor m\u00e9dico, comenc\u00e9 un tratamiento experimental con mi hijo al que llam\u00e9 \"El experimento de la oxitocina\". Document\u00e9 cada paso -cada observaci\u00f3n, cada contratiempo, cada momento de esperanza- en un blog que llegar\u00eda a leerse en todo el mundo: <em>Esperanza para HO<\/em>. Lo que comenz\u00f3 como una cr\u00f3nica personal se convirti\u00f3 en un salvavidas para otras familias que buscaban, como nosotros, respuestas en la oscuridad. En 2018, el experimento culmin\u00f3 finalmente con mi coautor\u00eda en la publicaci\u00f3n de un estudio de caso en la revista <a href=\"https:\/\/www.researchgate.net\/publication\/321664533_Oxytocin_and_Naltrexone_Successfully_Treat_Hypothalamic_Obesity_in_a_Boy_Post-Craniopharyngioma_Resection\"><em>Revista de Endocrinolog\u00eda Cl\u00ednica y Metabolismo<\/em>,<\/a> aportando una peque\u00f1a pero significativa prueba a un problema que necesitaba soluciones desesperadamente. Aunque fue un tratamiento exitoso en su momento, no era una soluci\u00f3n permanente. Pero aport\u00f3 una peque\u00f1a pieza de investigaci\u00f3n cient\u00edfica que, con el tiempo, dar\u00eda lugar a m\u00e1s investigaci\u00f3n cient\u00edfica hasta que, por fin, hubo realmente esperanza para HO.<\/p>\n\n\n\n<p>Ahora, quince a\u00f1os despu\u00e9s del diagn\u00f3stico de mi hijo, ha sucedido algo antes inimaginable: la Administraci\u00f3n de Alimentos y Medicamentos de EE.UU. ha aprobado <a href=\"https:\/\/www.globenewswire.com\/news-release\/2026\/03\/19\/3259502\/0\/en\/Rhythm-Pharmaceuticals-Announces-FDA-Approval-of-IMCIVREE-setmelanotide-for-Patients-with-Acquired-Hypothalamic-Obesity.html?fbclid=IwY2xjawQqIbJleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeX7-jHXo37T61aHt8IzMck21lMF8K-Fo_XG-m-bM_0XrNi4D5tJhOTjOdhI8_aem_c1-ogyC9AaiEc5rBl1oROw\">Imcivree\u00ae (setmelanotida)<\/a>el primer medicamento espec\u00edficamente indicado para la HO y la hiperfagia.<\/p>\n\n\n\n<p>Este momento representa mucho m\u00e1s que la llegada de un \u00fanico medicamento. Para las familias reci\u00e9n diagnosticadas, el paisaje ya no es \u00e1rido. No se les dir\u00e1 simplemente que aguanten. No tendr\u00e1n que afrontar esta enfermedad sin la posibilidad de un tratamiento m\u00e9dico. No tendr\u00e1n que confiar \u00fanicamente en soluciones improvisadas nacidas de la desesperaci\u00f3n.<\/p>\n\n\n\n<p>A\u00fan queda mucho trabajo por hacer. Ning\u00fan tratamiento es una cura. La obesidad hipotal\u00e1mica sigue siendo compleja, heterog\u00e9nea y profundamente desafiante. Hay que garantizar el acceso. Hay que seguir investigando. Hay que desarrollar nuevas terapias. Pero el cambio psicol\u00f3gico -de nada a algo- es profundo.<\/p>\n\n\n\n<p>Para quienes vivimos los a\u00f1os de la nada, esta aprobaci\u00f3n supone un profundo suspiro de alivio. Honra a las familias que soportaron sin opciones. Refleja el valor de los supervivientes que participaron en ensayos cl\u00ednicos. Es un reconocimiento a los investigadores que persistieron en el estudio de una enfermedad rara y dif\u00edcil.<\/p>\n\n\n\n<p>&nbsp;Hace quince a\u00f1os, cuando diagnosticaron a mi hijo, est\u00e1bamos al borde de un terreno desconocido y sin mapa. Hoy existe un tratamiento y, por fin, un camino a seguir.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>Para quienes vivimos los a\u00f1os de la nada, esta aprobaci\u00f3n supone un profundo suspiro de alivio. Honra a las familias que soportaron sin opciones. Refleja el valor de los supervivientes que participaron en ensayos cl\u00ednicos. Es un reconocimiento a los investigadores que persistieron en el estudio de una enfermedad rara y dif\u00edcil.<br><\/p>\n<\/blockquote>\n\n\n\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-ad2f72ca wp-block-group-is-layout-flex\">\n<figure class=\"wp-block-image size-large is-resized\"><img decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-1024x1024.jpg\" alt=\"\" class=\"wp-image-19224\" style=\"width:164px;height:auto\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-1024x1024.jpg 1024w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-300x300.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-150x150.jpg 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-768x768.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-12x12.jpg 12w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6-330x330.jpg 330w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2026\/03\/image-6.jpg 1120w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p><a href=\"https:\/\/www.rawoodfoundation.org\/es\/miembro\/eugenie-hsu-ph-d\/\">Doctora Eugenie Hsu<\/a> es psic\u00f3loga licenciada, cuidadora de un superviviente de craneofaringioma y Presidenta de la Junta de la RAWF. <\/p>\n<\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>A la luz de la reciente aprobaci\u00f3n por la FDA de la setmelanotida para la obesidad hipotal\u00e1mica, este comentario ofrece ... <a title=\"Esperanza para HO: La espera ha terminado\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2026\/03\/20\/hope-for-ho-the-wait-is-over\/\" aria-label=\"Leer m\u00e1s sobre Hope for HO: The Wait is Over\">Seguir leyendo<\/a><\/p>","protected":false},"author":6,"featured_media":19231,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,42,30],"tags":[],"class_list":["post-19222","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregiver-stories","category-health-medical","category-rawf-news","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>Hope for HO: The Wait is Over - Raymond A. 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