{"id":111,"date":"2026-05-26T14:05:43","date_gmt":"2026-05-26T14:05:43","guid":{"rendered":"https:\/\/www.ultraconecta.com\/ar\/?page_id=111"},"modified":"2026-09-18T09:17:44","modified_gmt":"2026-09-18T09:17:44","slug":"historias-de-pacientes","status":"publish","type":"page","link":"https:\/\/www.ultraconecta.com\/ar\/historias-de-pacientes\/","title":{"rendered":"Historias de pacientes"},"content":{"rendered":"<p><main><br \/>\n  <!-- ============================================================\n             STORIES HERO \u2014 Quote panel (left) + featured photo (right)\n             ============================================================ --><br \/>\n <!-- \n\n<section class=\"stories-hero\">\n    \n\n<div class=\"container\">\n      \n\n<div class=\"stories-hero__grid\">\n       \n\n\n<div class=\"stories-hero__intro\">\n          \n\n<h1 class=\"stories-hero__title\" style=\"text-align: center;color: #6D72A2;\">\n            PR\u00d3XIMAMENTE\n          <\/h1>\n\n\n          \n\n<p class=\"stories-hero__quote\" style=\"text-align: center;color: #6D72A2;\">\n            Conocer\u00e1s historias de pacientes\n          <\/p>\n\n\n     \n        <\/div>\n\n\n\n     \n      <\/div>\n\n\n    <\/div>\n\n\n  <\/section>\n\n --><\/p>\n<p><!-- hero section --> <\/p>\n<section class=\"page-hero\">\n<div class=\"container-his\">\n<div class=\"page-hero__inner\">\n<div class=\"page-hero__content\">\n<div class=\"page-hero__text\">\n<h3 class=\"page-hero__title\">\n            \u201cEn el momento en que uno entiende lo que tiene, puede tomar medidas,<br \/>\n            puede planificar su vida, puede entender hacia donde ir\u201d<br \/>\n        <\/h3>\n<div class=\"page-hero__signature\">\n            <span class=\"page-hero__line\"><\/span><\/p>\n<h3 class=\"page-hero__author\">PAOLA<\/h3>\n<p class=\"page-hero__role\">convive con XLH<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/div>\n<div class=\"page-hero__media\">\n        <img loading=\"lazy\" decoding=\"async\" fetchpriority=\"high\" src=\"\/ar\/wp-content\/uploads\/his_Bg.webp\" alt=\"Paola, paciente XLH, sonriendo\">\n      <\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>  <!-- ============================================================\n             STORY CARDS \u2014 heading + 3 video cards\n             ============================================================ --><\/p>\n<section class=\"stories\">\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\/\" class=\"breadcrumb__link\">Inicio<\/a><br \/>\n                    <span class=\"breadcrumb__sep\" aria-hidden=\"true\">\/<\/span><br \/>\n                    <span class=\"breadcrumb__current\">HISTORIAs xlh<\/span><br \/>\n                <\/nav>\n<p>               <!-- \n\n<h2 class=\"stories__heading\">Ver m\u00e1s historias de personas que viven con XLH<\/h2>\n\n\n                \n\n<p class=\"stories__intro\">\n                    \u00bfQuieres compartir tu historia con XLH? Ponete en contacto con nosotros en\n                    <a href=\"mailto:XLHResources@Ultragenyx.com\" class=\"stories__email\">XLHResources@Ultragenyx.com<\/a>.\n                <\/p>\n\n --><\/p>\n<div class=\"stories__grid\">\n<article class=\"story-card\">\n                        <button class=\"story-card__media\" type=\"button\" data-video-trigger data-video-src=\"https:\/\/player.vimeo.com\/video\/1225713669?h=73a23ee252&#038;badge=0&#038;autopause=0&#038;player_id=0&#038;app_id=58479%22\" aria-label=\"Reproducir el video de Ashley\" onclick=\"loadVideo(this)\"><br \/>\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/historia_1.png\" alt=\"Ashley, paciente con XLH\"><br \/>\n                            <span class=\"story-card__play\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 50 50\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <circle cx=\"25\" cy=\"25\" r=\"24\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"20,15 36,25 20,35\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                        <\/button><\/p>\n<div class=\"story-card__body\">\n<h3 class=\"story-card__title\">Conoc\u00e9 la historia de Paola<\/h3>\n<p>                          <!--  \n\n<p class=\"story-card__quote\">\n                                \u201cRealmente pude asumir la XLH cuando pude conectar con otras personas que la padec\u00edan\u201d\n                            <\/p>\n\n -->\n                        <\/div>\n<\/article>\n<article class=\"story-card\">\n                        <button class=\"story-card__media\" type=\"button\" data-video-trigger data-video-src=\"https:\/\/player.vimeo.com\/video\/1225713187?h=cdd9a38230&#038;badge=0&#038;autopause=0&#038;player_id=0&#038;app_id=58479%22\" aria-label=\"Reproducir el video de Mackenzie y Rhonda\" onclick=\"loadVideo(this)\"><br \/>\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/historia_2.png\" alt=\"Mackenzie y Rhonda, viviendo con XLH\"><br \/>\n                            <span class=\"story-card__play\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 50 50\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <circle cx=\"25\" cy=\"25\" r=\"24\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"20,15 36,25 20,35\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                        <\/button><\/p>\n<div class=\"story-card__body\">\n<h3 class=\"story-card__title\">Conoc\u00e9 la historia de Juan<\/h3>\n<p>                           <!-- \n\n<p class=\"story-card__quote\">\n                                \u201cVivir con una enfermedad rara s\u00f3lo significa que soy un ser humano que tiene que superar un obst\u00e1culo en su vida\u201d\n                            <\/p>\n\n -->\n                        <\/div>\n<\/article>\n<article class=\"story-card\">\n                        <button class=\"story-card__media\" type=\"button\" data-video-trigger data-video-src=\"https:\/\/player.vimeo.com\/video\/1225713186?h=d3807d7856&#038;badge=0&#038;autopause=0&#038;player_id=0&#038;app_id=58479%22\" aria-label=\"Reproducir el video de Natascha\" onclick=\"loadVideo(this)\"><br \/>\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/historia_3.png\" alt=\"Natascha, viviendo con XLH\"><br \/>\n                            <span class=\"story-card__play\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 50 50\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <circle cx=\"25\" cy=\"25\" r=\"24\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"20,15 36,25 20,35\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                        <\/button><\/p>\n<div class=\"story-card__body\">\n<h3 class=\"story-card__title\">Conoc\u00e9 la historia de Mar\u00eda Jos\u00e9<\/h3>\n<p>                           <!-- \n\n<p class=\"story-card__quote\">\n                                \u201cHe tenido que aprender a tomarme las cosas con un poco m\u00e1s de calma, a no intentar enfrentarme al mundo en un solo d\u00eda\u201d\n                            <\/p>\n\n -->\n                        <\/div>\n<\/article>\n<article class=\"story-card\">\n                        <button class=\"story-card__media\" type=\"button\" data-video-trigger data-video-src=\"https:\/\/player.vimeo.com\/video\/1225713184?h=326eba09f3&#038;badge=0&#038;autopause=0&#038;player_id=0&#038;app_id=58479%22\" aria-label=\"Reproducir el video de Jamest\" onclick=\"loadVideo(this)\"><br \/>\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/historia_4.png\" alt=\"CONOZCA A SEAN Y JAMESt XLH\"><br \/>\n                            <span class=\"story-card__play\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 50 50\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <circle cx=\"25\" cy=\"25\" r=\"24\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"20,15 36,25 20,35\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                        <\/button><\/p>\n<div class=\"story-card__body\">\n<h3 class=\"story-card__title\">Conoc\u00e9 la historia de Naomi y Paola<\/h3>\n<p>                          <!--  \n\n<p class=\"story-card__quote\">\n                                \u201cCreo que es realmente importante que la gente no se limite a ignorarlo... el conocimiento es poder en este caso\u201d\n                            <\/p>\n\n -->\n                        <\/div>\n<\/article>\n<article class=\"story-card\">\n                        <button class=\"story-card__media\" type=\"button\" data-video-trigger data-video-src=\"https:\/\/player.vimeo.com\/video\/1225713185?h=522cd77df9&#038;badge=0&#038;autopause=0&#038;player_id=0&#038;app_id=58479%22\" aria-label=\"Reproducir el video de Dillin\" onclick=\"loadVideo(this)\"><br \/>\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/historia_5.png\" alt=\"Dillin, paciente con XLH\"><br \/>\n                            <span class=\"story-card__play\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 50 50\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <circle cx=\"25\" cy=\"25\" r=\"24\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"20,15 36,25 20,35\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                        <\/button><\/p>\n<div class=\"story-card__body\">\n<h3 class=\"story-card__title\">Conoc\u00e9 la historia de Bastian<\/h3>\n<p>                           <!-- \n\n<p class=\"story-card__quote\">\n                                \"Cada d\u00eda tenemos que hacer muchas cosas, pero XLH nos ha hecho m\u00e1s fuertes, mejores personas\"\n                            <\/p>\n\n -->\n                        <\/div>\n<\/article><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>  <!-- ============================================================\n             SOCIAL RESOURCES\n             ============================================================ --><\/p>\n<section class=\"social-resources\">\n<div class=\"container\">\n             <!--  \n\n<hr class=\"social-resources__divider\">  --><\/p>\n<h2 class=\"social-resources__heading\">seguinos en Nuestras redes <\/h2>\n<ul class=\"social-resources__list\">\n<li class=\"social-resource\">\n                        <a href=\"https:\/\/www.instagram.com\/ultragenyxlatam\" class=\"social-resource__link\" target=\"_blank\"><br \/>\n                            <span class=\"social-resource__icon\" aria-hidden=\"true\"><br \/>\n                                <svg viewBox=\"0 0 16 16\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n                                    <path d=\"M8 1.44c1.07 0 1.77 0 2.1.01.33.01.71.02 1.13.04.39.02.69.06.92.12.23.05.42.11.56.16.19.07.35.16.49.25.14.09.28.21.43.34.13.14.25.28.34.42.09.15.18.31.25.5.05.13.11.32.16.55.06.23.1.54.12.93.01.42.02.79.03 1.13.01.33.01 1.03.01 2.11 0 1.06 0 1.76-.01 2.09-.01.33-.01.71-.03 1.12-.02.4-.06.71-.12.94-.05.23-.11.41-.16.55-.07.19-.16.35-.25.49-.09.15-.21.29-.34.42-.15.15-.29.27-.43.36-.14.09-.31.18-.49.25-.14.05-.33.11-.56.16-.23.06-.54.09-.92.1-.43.02-.81.03-1.13.04-.33.01-1.03.01-2.1.01-1.07 0-1.77-.01-2.1-.01-.33 0-.71-.02-1.13-.04-.39-.01-.69-.04-.92-.1-.23-.05-.42-.11-.56-.16-.19-.07-.35-.16-.49-.25-.14-.09-.28-.21-.43-.36-.13-.13-.25-.27-.34-.42-.09-.14-.18-.3-.25-.49-.05-.14-.11-.32-.16-.55-.06-.23-.09-.54-.1-.93-.02-.43-.03-.81-.04-1.13-.01-.33-.01-1.03-.01-2.09 0-1.08 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0.322917 7.92708 0 9.25 0H11.4688V2.75H10.0781C9.56771 2.75 9.26042 2.84635 9.15625 3.03906C9.05208 3.23177 9 3.50521 9 3.85938V5.23438H11.4844L11.1875 8H9V16Z\" fill=\"#FFFFFF\"\/>\n                                <\/svg><br \/>\n                            <\/span><br \/>\n                           <!-- <span class=\"social-resource__label\">Dale a \u201cMe Gusta\u201d en Facebook<\/span> --><br \/>\n                        <\/a>\n                    <\/li>\n<\/ul><\/div>\n<\/section>\n<p><\/main><\/p>\n<p><!-- video pop up  --><\/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<div style=\"padding:56.25% 0 0 0;position:relative;\">\n<p><!-- <iframe id=\"patient_videos\" src=\"https:\/\/player.vimeo.com\/video\/1210148157?badge=0&autopause=0&player_id=0&app_id=58479\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" style=\"position:absolute;top:0;left:0;width:100%;height:100%;\" title=\"02-Juan\"><\/iframe> --><\/p>\n<p>  <iframe\n        id=\"patient_video\"\n        src=\"\"\n        frameborder=\"0\"\n        allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\"\n        referrerpolicy=\"strict-origin-when-cross-origin\"\n        style=\"position:absolute;top:0;left:0;width:100%;height:100%;\"><br \/>\n    <\/iframe><\/p>\n<\/div>\n<\/div><\/div>\n<\/p><\/div>\n","protected":false},"excerpt":{"rendered":"<p>\u201cEn el momento en que uno entiende lo que tiene, puede tomar medidas, puede planificar su vida, puede entender hacia donde ir\u201d PAOLA convive con XLH Inicio \/ HISTORIAs xlh Conoc\u00e9 la historia de Paola Conoc\u00e9 la historia de Juan Conoc\u00e9 la historia de Mar\u00eda Jos\u00e9 Conoc\u00e9 la historia de Naomi y Paola Conoc\u00e9 la [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"page-template.php","meta":{"footnotes":""},"class_list":["post-111","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>Convivir con XLH | Historias de pacientes<\/title>\n<meta name=\"description\" content=\"Lea historias reales de personas que viven con Hipofosfatemia Ligada al Cromosoma X (XLH) en Argentina. 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