{"id":6612,"date":"2021-06-01T12:06:52","date_gmt":"2021-06-01T11:06:52","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=6612"},"modified":"2023-02-10T08:54:38","modified_gmt":"2023-02-10T08:54:38","slug":"research-living-with-a-rare-disease","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/es\/2021\/06\/research-living-with-a-rare-disease\/","title":{"rendered":"Investigaci\u00f3n \u2013 Vivir con una enfermedad rara"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"6612\" class=\"elementor elementor-6612\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2c20e7e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2c20e7e\" 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-8c603f3\" data-id=\"8c603f3\" 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-f08af8a elementor-widget elementor-widget-text-editor\" data-id=\"f08af8a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<h4>\u00bfLas enfermedades raras afectan la salud mental de los pacientes y sus familias?<\/h4><p>La investigaci\u00f3n ha demostrado que los pacientes y los cuidadores pueden experimentar un impacto negativo en el bienestar y la salud mental. Los tratamientos existentes casi nunca abordan los problemas de salud mental. La investigaci\u00f3n ha mostrado los siguientes hallazgos:<\/p><p>\u201c<strong><em>Debido a su enfermedad rara, el 95% de los encuestados se sinti\u00f3 preocupado o ansioso, el 93% se sinti\u00f3 estresado, el 90% se sinti\u00f3 deprimido, el 88% se sinti\u00f3 emocionalmente agotado y el 70% se sinti\u00f3 al borde del colapso.<\/em><\/strong>\u201d.<\/p><p>Aunque es bien sabido que las condiciones f\u00edsicas y mentales se impactan entre s\u00ed, a menudo se les dice a los pacientes que los m\u00e9dicos no los toman en serio o sienten que no los toman en serio. Afirman que es &#039;todo en su cabeza&#039;.<\/p><p>Estos gr\u00e1ficos muestran la poca frecuencia con la que los profesionales de la salud preguntan sobre la salud mental de los pacientes:<\/p>\t\t\t\t\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-e5c203c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e5c203c\" 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-50 elementor-top-column elementor-element elementor-element-57aeaf2\" data-id=\"57aeaf2\" 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-a0dd3d4 elementor-widget elementor-widget-image\" data-id=\"a0dd3d4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"708\" height=\"475\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh1.png\" class=\"attachment-large size-large wp-image-6614\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh1.png 708w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh1-300x201.png 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh1-16x12.png 16w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh1-600x403.png 600w\" sizes=\"(max-width: 708px) 100vw, 708px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-52317dc\" data-id=\"52317dc\" 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-ae8da58 elementor-widget elementor-widget-image\" data-id=\"ae8da58\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"694\" height=\"507\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh2.png\" class=\"attachment-large size-large wp-image-6615\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh2.png 694w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh2-300x219.png 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh2-16x12.png 16w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/06\/mh2-600x438.png 600w\" sizes=\"(max-width: 694px) 100vw, 694px\" \/>\t\t\t\t\t\t\t\t\t\t\t\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-de8da5a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"de8da5a\" 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-c80f452\" data-id=\"c80f452\" 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-5bf5e29 elementor-widget elementor-widget-text-editor\" data-id=\"5bf5e29\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>La falta de atenci\u00f3n por parte de los profesionales de la salud aumenta la angustia de los pacientes, mientras que las interacciones bien manejadas pueden brindar alivio a las personas y sus familias.<\/p><p>Aunque las fuentes de apoyo son muy valoradas, los pacientes a menudo desconocen su disponibilidad. En la pr\u00e1ctica, podr\u00edan ser ofrecidos por una organizaci\u00f3n ben\u00e9fica oa trav\u00e9s de redes de grupos de pares o ambos.<\/p><h4>\u00bfC\u00f3mo podr\u00eda integrarse la atenci\u00f3n de la salud mental con los servicios para quienes padecen enfermedades raras?<\/h4><p>La investigaci\u00f3n ha llegado a las siguientes recomendaciones:<\/p><ol><li>Proporcionar a los profesionales de la salud las habilidades, el conocimiento y la capacidad para:<\/li><\/ol><ul><li>demostrar conciencia de los desaf\u00edos emocionales de vivir con una enfermedad rara;<\/li><li>manejar las discusiones sobre salud mental con sensibilidad.<\/li><\/ul><ol start=\"2\"><li>Los pacientes y cuidadores deben ser se\u00f1alados de forma rutinaria a las fuentes de apoyo.<\/li><li>Los servicios coordinados de enfermedades raras deben incluir la evaluaci\u00f3n de las necesidades de salud mental y el acceso a los servicios de salud mental y estos deben extenderse a los cuidadores.<\/li><\/ol><h4>Las buenas noticias<\/h4><p>En Ring20, hemos identificado la importancia de la atenci\u00f3n de la salud mental para las personas que padecen el s\u00edndrome r(20) y nos gustar\u00eda poder ofrecer un apoyo m\u00e1s espec\u00edfico a las familias que sus equipos m\u00e9dicos nos indican. Como resultado, planeamos trabajar con una organizaci\u00f3n profesional que brinde recursos de asesoramiento y bienestar, capacitaci\u00f3n e informaci\u00f3n para organizaciones y grupos de pacientes de enfermedades raras para brindarles un mejor apoyo a USTEDES, nuestras familias r(20). Tenemos una serie de solicitudes de subvenciones en curso para financiar la provisi\u00f3n de apoyo de salud mental y bienestar para nuestra comunidad r(20).<\/p><p>Reconocemos la necesidad y tenemos una soluci\u00f3n. Ahora todo lo que necesitamos son los fondos para entregar. Damos la bienvenida a cualquier apoyo, ahora puede donar a esta importante causa a trav\u00e9s de nuestro <a href=\"https:\/\/ring20researchsupport.co.uk\/es\/donate\/\">P\u00e1gina de donaciones<\/a>.<\/p><p>\u00a1Mira este espacio para m\u00e1s informaci\u00f3n!<\/p><p><strong>Referencia<\/strong>: Viviendo con una condici\u00f3n rara: Los efectos en la salud mental. Investigaci\u00f3n encargada por Rare Disease UK, Genetic Alliance UK y SWAN UK en 2018.<\/p>\t\t\t\t\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>La investigaci\u00f3n ha demostrado que los pacientes y cuidadores que viven con una enfermedad rara experimentan un impacto negativo en el bienestar y la salud mental. <\/p>","protected":false},"author":3,"featured_media":6668,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","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":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center 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