{"id":3933,"date":"2024-09-17T10:37:22","date_gmt":"2024-09-17T14:37:22","guid":{"rendered":"https:\/\/sleepconsortium.org\/?p=3933"},"modified":"2024-09-17T10:39:16","modified_gmt":"2024-09-17T14:39:16","slug":"voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/es\/news\/voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia\/","title":{"rendered":"El informe \"La voz del paciente\" aporta informaci\u00f3n crucial sobre la hipersomnia idiop\u00e1tica"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"3933\" class=\"elementor elementor-3933\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f85cbc1 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"f85cbc1\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4ffb360\" data-id=\"4ffb360\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-cb2a0ef elementor-widget elementor-widget-heading\" data-id=\"cb2a0ef\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">El informe \"La voz del paciente\" aporta informaci\u00f3n crucial sobre la hipersomnia idiop\u00e1tica<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c717c5c elementor-widget elementor-widget-heading\" data-id=\"c717c5c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Un nuevo informe revela las experiencias reales y las necesidades de tratamiento de las personas con hipersomnia idiop\u00e1tica<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8f5f1a5 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"8f5f1a5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2568678\" data-id=\"2568678\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-daf6e32 elementor-widget elementor-widget-text-editor\" data-id=\"daf6e32\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"p1\">West Palm Beach, Florida, 17 de septiembre de 2024 \/PRNewswire\/ - El Consorcio del Sue\u00f1o, en colaboraci\u00f3n con una coalici\u00f3n de organizaciones mundiales de defensa de los pacientes relacionados con el sue\u00f1o, anuncia con orgullo la publicaci\u00f3n del <a href=\"https:\/\/sleepconsortium.org\/es\/illuminate-hypersomnia\/\"><span class=\"s1\">\"Informe \"La voz del paciente<\/span><\/a> sobre la hipersomnia idiop\u00e1tica (HII). Este documento fundamental, producto de la iniciativa Illuminate Hypersomnia, ofrece una visi\u00f3n completa de las experiencias vividas y las aspiraciones de tratamiento de las personas con hipersomnia idiop\u00e1tica.<\/p><p class=\"p1\">El informe \"La voz del paciente\" se basa en una amplia informaci\u00f3n recopilada a trav\u00e9s de una reuni\u00f3n de desarrollo de f\u00e1rmacos centrada en el paciente (EL-PFDD) dirigida externamente, celebrada el 11 de abril de 2024, y una encuesta detallada que atrajo 811 respuestas de personas que viven en 21 pa\u00edses. Este informe pionero pretende arrojar luz sobre los importantes retos a los que se enfrentan las personas que viven con HI, proporcionando informaci\u00f3n muy valiosa para los reguladores, los desarrolladores farmac\u00e9uticos, los investigadores, los profesionales sanitarios y los responsables pol\u00edticos.<\/p><p class=\"p1\">La iniciativa Illuminate Hypersomnia se dise\u00f1\u00f3 para dar voz a las personas afectadas por la hipersomnia. Mediante la exploraci\u00f3n de sus relatos personales, las estrategias de tratamiento actuales y las necesidades terap\u00e9uticas no cubiertas, el informe pretende orientar la investigaci\u00f3n y el desarrollo terap\u00e9utico futuros. Se trata de un esfuerzo paralelo a la iniciativa PFDD de la Administraci\u00f3n de Alimentos y Medicamentos de EE.UU. para recoger de forma m\u00e1s sistem\u00e1tica las perspectivas de los pacientes sobre sus enfermedades y las terapias disponibles para tratarlas. El informe IH se ha presentado a la FDA para su publicaci\u00f3n en la p\u00e1gina web de la agencia de <span class=\"s1\">informes de reuniones sobre condiciones espec\u00edficas<\/span>.<\/p><p class=\"p1\">\"Por primera vez, se presenta con honestidad y vulnerabilidad una exposici\u00f3n de 360 grados de la experiencia vivida de la HI a una escala nunca antes vista, escuchada o publicada\", declar\u00f3 Claire Wylds-Wright, cofundadora y directora de experiencia del Consorcio del Sue\u00f1o. \"Este oportuno informe es inequ\u00edvoco en su proclamaci\u00f3n individual y colectiva de que vivir durante a\u00f1os con un diagn\u00f3stico y a\u00f1os adicionales sin un tratamiento adecuado para la HI puede causar estragos en todos los aspectos de la vida de una persona. Esta declaraci\u00f3n comunitaria de lo que supone vivir con IH exige una llamada a la acci\u00f3n a la que deben responder en consecuencia quienes ocupan puestos de responsabilidad y oportunidad. Lea este informe, digi\u00e9ralo, comp\u00e1rtalo. Y ayude a desahogar a quienes han tenido el valor de decirnos lo que necesitan\".<\/p><p class=\"p1\">Las principales conclusiones del informe destacan:<\/p><p class=\"p1\">- El conjunto de s\u00edntomas que impiden de forma significativa el funcionamiento diario, incluido el distintivo IH de somnolencia diurna \"irreprimible\", alteraci\u00f3n de la calidad de la vigilia y \"niebla cerebral\" que persiste durante todo el d\u00eda.<\/p><p class=\"p1\">- Las largas odiseas diagn\u00f3sticas son la norma, con un tiempo desde el inicio de los s\u00edntomas hasta el diagn\u00f3stico que oscila entre 0 y 67 a\u00f1os, y una media de 14 a\u00f1os de retraso diagn\u00f3stico seg\u00fan las respuestas a la encuesta.<\/p><p class=\"p1\">- Las limitaciones de los tratamientos actuales, incluso cuando se utilizan en combinaci\u00f3n, y la necesidad urgente de opciones terap\u00e9uticas m\u00e1s eficaces. El 60% de los encuestados indicaron que la HI no est\u00e1 controlada en absoluto o est\u00e1 mal controlada.<\/p><p class=\"p1\">- El estigma y la incredulidad sobre la realidad de la HI aumentan considerablemente la carga que soportan las personas con HI; desean urgentemente que se les crea, que se les tome en serio y que se les trate con mayor respeto y dignidad.<\/p><p class=\"p1\">Se espera que este informe de 80 p\u00e1ginas a todo color sirva como recurso vital para avanzar en el di\u00e1logo en torno a la HI y apoyar el desarrollo de terapias espec\u00edficas. Tambi\u00e9n refuerza el compromiso continuo del Consorcio del Sue\u00f1o y sus socios, incluyendo la Associa\u00e7\u00e3o Brasileira de Narcolepsia e Hipersonia Idiop\u00e1tica, Damm Good Sleep, Days4Naps, European Narcolepsy Alliance for Patients, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep, y PWN4PWN, para mejorar los resultados para aquellos con HI.<\/p><p class=\"p1\">Para continuar el trabajo que esta iniciativa ayud\u00f3 a impulsar, la Fundaci\u00f3n Hipersomnia organizar\u00e1 un <a href=\"https:\/\/www.hypersomniafoundation.org\/event\/beyondsleepyatlanta\/\"><span class=\"s1\">Conferencia sat\u00e9lite #BeyondSleepy<\/span><\/a> en Atlanta el 19 de octubre de 2024, con un d\u00eda de programas y puntos de conexi\u00f3n para las personas que viven con HI y otros trastornos del sue\u00f1o. Se est\u00e1n planificando otros eventos educativos y de investigaci\u00f3n para mantener el impulso.<\/p><p class=\"p1\">Las organizaciones que apoyan generosamente la iniciativa Illuminate Hypersomnia con subvenciones educativas sin restricciones son: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda y Zevra Therapeutics.<\/p><p class=\"p1\">Para m\u00e1s informaci\u00f3n sobre el informe \"La voz del paciente\" y acceder al documento completo, visite <a href=\"https:\/\/bit.ly\/illuminate-IH\"><span class=\"s1\">https:\/\/bit.ly\/illuminate-IH<\/span><\/a>.<\/p><p class=\"p1\"><strong>**Acerca del Consorcio del Sue\u00f1o<\/strong><\/p><p class=\"p1\">El Consorcio del Sue\u00f1o es una organizaci\u00f3n registrada sin \u00e1nimo de lucro dedicada al avance de la investigaci\u00f3n, la comprensi\u00f3n y el tratamiento de los trastornos centrales de la hipersomnolencia, incluida la hipersomnia idiop\u00e1tica. Mediante esfuerzos de colaboraci\u00f3n e investigaci\u00f3n innovadora, el Consorcio pretende mejorar la vida de los afectados por estas enfermedades raras y dif\u00edciles.<\/p><p class=\"p1\"><strong>**CONTACTO CON LOS MEDIOS DE COMUNICACI\u00d3N<\/strong><\/p><p class=\"p1\">Dra. Lindsay Jesteadt\u00a0<\/p><p class=\"p1\">Cofundadora y Directora General, Consorcio del Sue\u00f1o\u00a0<\/p><p class=\"p1\">Correo electr\u00f3nico: <a href=\"mailto:PFDD@sleepconsortium.org\">PFDD@sleepconsortium.org<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>El Consorcio del Sue\u00f1o, en colaboraci\u00f3n con una coalici\u00f3n de organizaciones mundiales de defensa de los pacientes relacionados con el sue\u00f1o, anuncia con orgullo la publicaci\u00f3n del informe \"La voz del paciente\" sobre la hipersomnia idiop\u00e1tica (HII). <\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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