{"id":129,"date":"2026-05-28T11:52:24","date_gmt":"2026-05-28T11:52:24","guid":{"rendered":"https:\/\/www.ultraconecta.com\/ar\/?page_id=129"},"modified":"2026-09-18T09:17:09","modified_gmt":"2026-09-18T09:17:09","slug":"manejo-de-la-enfermedad","status":"publish","type":"page","link":"https:\/\/www.ultraconecta.com\/ar\/manejo-de-la-enfermedad\/","title":{"rendered":"Manejo de la enfermedad"},"content":{"rendered":"<p>    <main><\/p>\n<p>        <!-- ========================================================\n             1. PAGE HERO \u2014 Title + intro + Cheryl video\n             ======================================================== --><\/p>\n<section class=\"page-hero\">\n<div class=\"container\">\n<div class=\"page-hero__inner\">\n<div class=\"page-hero__content\">\n<h1 class=\"page-hero__title\">MANEJO DE LA<br class=\"hero-br\">ENFERMEDAD<\/h1>\n<p class=\"page-hero__text\">\n          Contar con un manejo adecuado de la enfermedad, un equipo m\u00e9dico y cuidado continuo, puede cambiar el camino de una persona que convive con XLH.\n        <\/p>\n<\/p><\/div>\n<div class=\"page-hero__media\">\n        <img loading=\"lazy\" decoding=\"async\" fetchpriority=\"high\"\n             src=\"\/ar\/wp-content\/uploads\/Paola-convive.webp\"\n             alt=\"Paola, paciente XLH, sonriendo\">\n      <\/div>\n<div class=\"page-hero__name\">\n<p>Paola convive<br class=\"hero-br\">con XLH<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             2. BREADCRUMB\n             ======================================================== --><\/p>\n<div class=\"container\">\n<div class=\"content-wrap\">\n<nav class=\"breadcrumb\" aria-label=\"Migas de pan\">\n                <a href=\"https:\/\/www.ultraconecta.com\/ar\/\">Inicio<\/a><br \/>\n                <span class=\"breadcrumb__sep\" aria-hidden=\"true\">\/<\/span><br \/>\n                <span class=\"breadcrumb__current\" aria-current=\"page\">Manejo de la enfermedad<\/span><br \/>\n            <\/nav>\n<\/p><\/div>\n<\/p><\/div>\n<p>        <!-- ========================================================\n             3. INTRO BLOCK \u2014 \"Establecer la atenci\u00f3n\u2026\"\n             ======================================================== --><\/p>\n<section class=\"intro-block\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n             <!--   \n\n<h2 class=\"intro-block__heading\">\n                    Establecer la atenci\u00f3n con el equipo adecuado de m\u00e9dicos y profesionales sanitarios.\n                <\/h2>\n\n --><\/p>\n<p class=\"intro-block__text\">\n                    <strong>Es importante encontrar el equipo de atenci\u00f3n m\u00e9dica adecuado con el que puedas sentirse c\u00f3modo. <\/strong>Ellos pueden proporcionar atenci\u00f3n personalizada,<br \/>\napoyo y educaci\u00f3n sobre la enfermedad.\n                <\/p>\n<p class=\"intro-block__text\">\n                    Expres\u00e1 tus inquietudes y realiz\u00e1 las preguntas que necesites sobre XLH para aprender a llevar un mejor cuidado de tu enfermedad.<br \/>\nEl manejo es distinto en ni\u00f1os y adultos.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             4. SPLIT SECTION \u2014 Children (image left, content right)\n             ======================================================== --><\/p>\n<section class=\"split-section\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n<div class=\"split-section__grid split-section__grid-max-w\">\n<div class=\"split-section__media\">\n                        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/manejo-de-enfermedad-ninos-xlh.jpg\"\n                             alt=\"Gr\u00e1fico que muestra tres objetivos del manejo de la enfermedad en pacientes XLH ni\u00f1os\">\n                    <\/div>\n<div class=\"split-section__content section-up\">\n<h3 class=\"split-section__heading\">\n                            En ni\u00f1os, algunos objetivos pueden incluir:<br \/>\n                        <\/h3>\n<p>                      <!--  \n\n<p class=\"split-section__intro\">\n                            Su m\u00e9dico puede explicarte los objetivos de un adecuado manejo de la enfermedad en ni\u00f1os:\n                        <\/p>\n\n --><\/p>\n<ul class=\"split-section__list\">\n<li>Abordar los problemas de crecimiento.<\/li>\n<li>Mejorar el raquitismo existente y la mineralizaci\u00f3n de huesos y dientes.<\/li>\n<li>Corregir el arqueamiento de las piernas.<\/li>\n<li>Mejorar la funci\u00f3n f\u00edsica.<\/li>\n<\/ul><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             5. SPLIT SECTION \u2014 Adults (content left, image right, tinted bg)\n             ======================================================== --><\/p>\n<section class=\"split-section split-section--tinted\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n<div class=\"split-section__grid split-section__grid--reverse split-section__grid-max-w\">\n<div class=\"split-section__content section-up\">\n<h3 class=\"split-section__heading\">\n                            En adultos, algunos objetivos pueden incluir:<br \/>\n                        <\/h3>\n<p>                      <!--  \n\n<p class=\"split-section__intro\">\n                            Tu m\u00e9dico puede explicarte los objetivos de un adecuado manejo de la enfermedad en adultos:\n                        <\/p>\n\n --><\/p>\n<ul class=\"split-section__list\">\n<li>Reducir el dolor, la fatiga y la rigidez de los<br \/>\n                             huesos, m\u00fasculos y articulaciones<\/li>\n<li>Corregir el arqueamiento de las piernas<\/li>\n<li>Mejorar la salud \u00f3sea y dental<\/li>\n<\/ul><\/div>\n<div class=\"split-section__media\">\n                        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/manejo-de-enfermedad-adultos-xlh-v3.png\"\n                             alt=\"Gr\u00e1fico que muestra tres objetivos del manejo de la enfermedad en pacientes XLH adultos\">\n                    <\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             6. SPLIT SECTION \u2014 Monitoring (image left, content right)\n             ======================================================== --><\/p>\n<section class=\"split-section\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n<div class=\"split-section__grid\">\n<div class=\"split-section__media\">\n                        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/d5476add2c25a29c82331f7103e8185cd442b356-scaled.jpg\"\n                             alt=\"Mar\u00eda Jos\u00e9, paciente XLH, sonriendo junto a su abuela\"><br \/>\n                             <span class=\"split-section__caption\"><br \/>\n                             Mar\u00eda Jos\u00e9, convive con XLH<br \/>\n                              <\/span>\n                    <\/div>\n<div class=\"split-section__content\">\n<h3 class=\"split-section__heading\">\n                            Comprender la progresi\u00f3n de XLH puede ayudarte a vos o a tu familiar a prepararse para el futuro<br \/>\n                        <\/h3>\n<p>                       <!-- \n\n<p class=\"split-section__intro\">\n                            XLH es una enfermedad progresiva que dura toda la vida y cuyos s\u00edntomas cambian con el tiempo.\n                                 <strong>Comprender la progresi\u00f3n de  XLH puede ayudarte a vos o a tu familiar a prepararse\n                                  para el futuro.<\/strong>\n                        <\/p>\n\n --><\/p>\n<ul class=\"split-section__list\">\n<li>Los s\u00edntomas de XLH var\u00edan entre ni\u00f1os y adultos.<\/li>\n<li>Es posible experimentar cambios en la funci\u00f3n fisica con el paso de los a\u00f1os. <\/li>\n<li>Habl\u00e1 con tu m\u00e9dico o el de tu hijo para obtener recomendaciones espec\u00edficas sobre los estudios m\u00e9dicos necesarios en cada etapa de la vida a fin de lograr un adecuado manejo de la enfermedad.<\/li>\n<\/ul><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             7. SPLIT SECTION \u2014 Transition (content left, image right, tinted bg)\n             ======================================================== --><\/p>\n<section class=\"split-section split-section--tinted\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n               <!--\n\n<div class=\"split-section__grid split-section__grid--reverse\">  --><\/p>\n<div class=\"split-section__grid\">\n<div class=\"split-section__content\">\n<h3 class=\"split-section__heading\">\n                            Transici\u00f3n en la atenci\u00f3n a adultos j\u00f3venes con XLH<br \/>\n                        <\/h3>\n<p class=\"split-section__intro\">\n                            <strong>XLH es una enfermedad cr\u00f3nica y progresiva,<\/strong> por lo que es importante que los adultos j\u00f3venes con XLH hagan la transici\u00f3n de un m\u00e9dico pediatra a un m\u00e9dico de adultos para seguir con el manejo de su enfermedad.<\/p>\n<\/p><\/div>\n<div class=\"split-section__media\">\n                        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/d05b524779dea2204e1324f22c90be3b35ee2f44-1.jpg\"\n                             alt=\"Gr\u00e1fico que muestra los signos de progresi\u00f3n de XLH a lo largo de la vida\">\n                    <\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             8. SPLIT SECTION \u2014 Asesoramiento gen\u00e9tico (image left, content right)\n             ======================================================== --><\/p>\n<section class=\"split-section\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n<div class=\"split-section__grid\">\n<div class=\"split-section__content\">\n<h3 class=\"split-section__heading\">Asesoramiento gen\u00e9tico<\/h3>\n<p class=\"split-section__intro\">\n                           Recibir el diagn\u00f3stico de un trastorno gen\u00e9tico como XLH puede ser abrumador. Los <strong>m\u00e9dicos genetistas<\/strong> pueden ayudarte a diagnosticar tu enfermedad o la de tu hijo. Adem\u00e1s, pueden identificar qu\u00e9 otros familiares podr\u00edan haber heredado tambi\u00e9n la enfermedad.\n                        <\/p>\n<\/p><\/div>\n<div class=\"split-section__media\">\n                        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/asesoramiento-genetico-para-xlh-1.jpg\"\n                             alt=\"Gr\u00e1fico que muestra el apoyo de los m\u00e9dicos genetistas en el camino del diagn\u00f3stico en XLH\" class=\"img-ases\">\n                    <\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<hr class=\"social-resources__divider\">\n<section class=\"references references-main\">\n<div class=\"container\">\n<div class=\"content-wrap-one\">\n<h2 class=\"references__title\">Referencia:<\/h2>\n<ol class=\"references__list\">\n<li class=\"references__item\">\n          Carpenter TO, et al.\u00a0J Bone Miner Res. 2011 Jul;26(7):1381\u20131388.\n        <\/li>\n<li class=\"references__item\">\n         Haffner D, et al. Nat Rev Nephrol. 2019 Jul;15(7):435-455.\n        <\/li>\n<\/ol><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ========================================================\n             9. CTA BANNER \u2014 Purple band\n             ======================================================== --><br \/>\n    <!--    \n\n\n<section class=\"cta-banner\">\n            \n\n<div class=\"container\">\n                \n\n<p class=\"cta-banner__text\">\n                    Explore los recursos disponibles para saber m\u00e1s sobre XLH\n                <\/p>\n\n\n                <a href=\"#\" class=\"btn btn--pill btn--cyan cta-banner__button\">\n                    Ver recursos de XLH\n                <\/a>\n            <\/div>\n\n\n        <\/section>\n\n   \n   --><br \/>\n    <\/main><\/p>\n<div class=\"video-modal\" id=\"videoModal\" aria-hidden=\"true\" role=\"dialog\" aria-modal=\"true\" aria-label=\"Reproductor de video\">\n<div class=\"video-modal__backdrop\" data-modal-close><\/div>\n<div class=\"video-modal__dialog\">\n            <button class=\"video-modal__close\" type=\"button\" data-modal-close aria-label=\"Cerrar video\"><br \/>\n                <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                    <line x1=\"6\" y1=\"6\" x2=\"26\" y2=\"26\" stroke=\"currentColor\" stroke-width=\"2.5\" stroke-linecap=\"round\"\/>\n                    <line x1=\"26\" y1=\"6\" x2=\"6\" y2=\"26\" stroke=\"currentColor\" stroke-width=\"2.5\" stroke-linecap=\"round\"\/>\n                <\/svg><br \/>\n            <\/button><\/p>\n<div class=\"video-modal__player\">\n                <video id=\"videoModalPlayer\" controls playsinline preload=\"metadata\" poster=\"images\/video-poster-cheryl.jpg\"><source src=\"videos\/cheryl.mp4\" type=\"video\/mp4\">Tu navegador no soporta la reproducci\u00f3n de video.<\/video>\n            <\/div>\n<\/p><\/div>\n<\/p><\/div>\n","protected":false},"excerpt":{"rendered":"<p>MANEJO DE LAENFERMEDAD Contar con un manejo adecuado de la enfermedad, un equipo m\u00e9dico y cuidado continuo, puede cambiar el camino de una persona que convive con XLH. Paola convivecon XLH Inicio \/ Manejo de la enfermedad Es importante encontrar el equipo de atenci\u00f3n m\u00e9dica adecuado con el que puedas sentirse c\u00f3modo. Ellos pueden proporcionar [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-129","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Manejo de la Hipofosfatemia Ligada al X | XLH<\/title>\n<meta name=\"description\" content=\"Entend\u00e9 c\u00f3mo se maneja la Hipofosfatemia Ligada al X con atenci\u00f3n especializada multidisciplinaria. Conoc\u00e9 los roles de nefr\u00f3logos, reumat\u00f3logos y cirujanos ortop\u00e9dicos en el tratamiento de la XLH.\" \/>\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.ultraconecta.com\/ar\/manejo-de-la-enfermedad\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00bfC\u00f3mo se Maneja la XLH? | Tratamiento y Atenci\u00f3n Especializada\" \/>\n<meta property=\"og:description\" content=\"La XLH requiere atenci\u00f3n coordinada de especialistas que incluyen nefr\u00f3logos, reumat\u00f3logos y cirujanos ortop\u00e9dicos. 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