{"id":4114,"date":"2020-12-30T01:42:27","date_gmt":"2020-12-30T00:42:27","guid":{"rendered":"https:\/\/f101g.org\/consulta-multidisciplinar-sobre-el-sindrome-de-marfan-organizada-en-la-ucl-entrevista-conjunta-con-el-prof-dr-thierry-sluysmans-y-ludivine-verboogen\/"},"modified":"2026-08-11T14:11:06","modified_gmt":"2026-08-11T12:11:06","slug":"consulta-multidisciplinar-sobre-el-sindrome-de-marfan-organizada-en-la-ucl-entrevista-conjunta-con-el-prof-dr-thierry-sluysmans-y-ludivine-verboogen","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/consulta-multidisciplinar-sobre-el-sindrome-de-marfan-organizada-en-la-ucl-entrevista-conjunta-con-el-prof-dr-thierry-sluysmans-y-ludivine-verboogen\/","title":{"rendered":"\u00abConsulta multidisciplinar sobre el s\u00edndrome de Marfan organizada en la UCL\u00bb. Entrevista conjunta con el Prof. Dr. Thierry Sluysmans y Ludivine Verboogen"},"content":{"rendered":"<p><em>Esta entrevista se public\u00f3 en <a href=\"https:\/\/www.luss.be\/wp-content\/uploads\/2020\/10\/luss-chainon-52-def.pdf\" target=\"_blank\" rel=\"noopener\">\u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb del LUSS, n\u00ba 52 de septiembre de 2020<\/a>.<\/em><\/p>\n<p style=\"text-align: justify;\"><strong><em>Le Cha\u00eenon (LC) : Ludivine, \u00bfqu\u00e9 es el s\u00edndrome de Marfan?<\/em><\/strong><\/p>\n<p style=\"text-align: justify;\">Ludivine Verboogen (LV): El s\u00edndrome de Marfan es una rara enfermedad multisist\u00e9mica que afecta al coraz\u00f3n, los ojos, los pulmones y el sistema musculoesquel\u00e9tico.<\/p>\n<p style=\"text-align: justify;\">Por lo general, los pacientes y sus familias atraviesan una verdadera carrera de obst\u00e1culos para obtener un diagn\u00f3stico y luego encontrar a los distintos especialistas capaces de ofrecer un seguimiento terap\u00e9utico de los da\u00f1os causados por la enfermedad.<\/p>\n<p style=\"text-align: justify;\"><strong><em>LC: Profesor Thierry Sluysmans, \u00bfen qu\u00e9 consiste la consulta multidisciplinar organizada en la Universidad Cat\u00f3lica de Lovaina (UCL)?<\/em><\/strong><\/p>\n<p><strong style=\"text-align: justify;\"><u><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-1449\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2020\/12\/Thierry-Sluysmans-1.png\" alt=\"\" width=\"300\" height=\"400\"><\/u><\/strong><\/p>\n<p style=\"text-align: justify;\">Thierry Sluysmans (TS): La consulta multidisciplinar creada en el UCL re\u00fane a los distintos especialistas cuyos conocimientos son necesarios para diagnosticar y controlar el s\u00edndrome de Marfan. El equipo incluye cardi\u00f3logos, genetistas, oftalm\u00f3logos, traumat\u00f3logos, otorrinolaring\u00f3logos y logopedas. Durante la consulta multidisciplinar, el paciente que padece (o se sospecha que padece) s\u00edndrome de Marfan es examinado en una sola ma\u00f1ana por estos especialistas.  <\/p>\n<p style=\"text-align: justify;\"><strong><em>LC: Ludivine, \u00bfcu\u00e1les son las ventajas de esta consulta multidisciplinar para los pacientes?<\/em><\/strong><\/p>\n<p style=\"text-align: justify;\">LV: El enfoque global acelera el diagn\u00f3stico de la enfermedad. De este modo, podr\u00e1 utilizarse para mejorar el tratamiento de esta enfermedad rara y multisist\u00e9mica. En el d\u00eda a d\u00eda, las consultas multidisciplinares nos cambian la vida, ya que reducen el n\u00famero de consultas con distintos especialistas en distintos lugares y a distintas horas, lo que puede ser dif\u00edcil de gestionar en casa y en el trabajo.  <\/p>\n<p style=\"text-align: justify;\"><strong><em>LC: Profesor Sluysmans, \u00bfcu\u00e1les son las ventajas para m\u00e9dicos e investigadores?<\/em><\/strong><\/p>\n<p style=\"text-align: justify;\">TS: Para los m\u00e9dicos, las consultas multidisciplinares tienen la ventaja de reunir todos los datos del expediente m\u00e9dico de un paciente, lo que les ayuda a hacer un seguimiento lo m\u00e1s eficaz posible de su salud. Para los investigadores, esta agrupaci\u00f3n les permite aportar datos a la investigaci\u00f3n cient\u00edfica. <\/p>\n<p style=\"text-align: justify;\"><strong><em>LC: \u00bfTiene algo que a\u00f1adir?<\/em><\/strong><\/p>\n<p style=\"text-align: justify;\">LV: Personalmente, estoy encantada de que exista la consulta establecida en el UCL y s\u00f3lo puedo esperar que esta pr\u00e1ctica contin\u00fae y se extienda a otras enfermedades raras.<\/p>\n<p style=\"text-align: justify;\">Como miembro de la Association Belge du Syndrome de Marfan (ABSM), me gustar\u00eda ver nuevas mejoras en el apoyo prestado a los ni\u00f1os en la transici\u00f3n a las consultas de adultos.<\/p>\n<p style=\"text-align: justify;\">Y, como Vicepresidente de RaDiOrg, debo abogar por que los equipos multidisciplinares existentes reciban financiaci\u00f3n y reconocimiento para que puedan convertirse en aut\u00e9nticos Centros de Experiencia. Este era el objetivo del Plan de Acci\u00f3n sobre Enfermedades Raras, que ha tardado mucho en entrar en vigor. <\/p>\n<p style=\"text-align: justify;\"><strong>Por Ludivine VERBOOGEN, madre de un ni\u00f1o con s\u00edndrome de Marfan, miembro de la Asociaci\u00f3n Belga del S\u00edndrome de Marfan, Vicepresidenta de RaDiOrg y fundadora de la Fundaci\u00f3n 101 Genomas, y por el Prof. Dr. M. M. M. M. D., Presidente de la Asociaci\u00f3n Belga del S\u00edndrome de Marfan. Thierry SLUYSMANS, cardi\u00f3logo pedi\u00e1trico responsable de la consulta multidisciplinar de Marfan organizada en el UCL <\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Esta entrevista se public\u00f3 en \u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb del LUSS, n\u00ba &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3253,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[186],"tags":[],"class_list":["post-4114","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-marfan"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>&quot;Consulta multidisciplinar sobre el s\u00edndrome de Marfan organizada en la UCL&quot;. 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