{"id":106393,"date":"2025-05-30T06:06:41","date_gmt":"2025-05-30T10:06:41","guid":{"rendered":"https:\/\/infoelnuevonorte.com\/?p=106393"},"modified":"2025-05-30T06:06:42","modified_gmt":"2025-05-30T10:06:42","slug":"dia-internacional-del-sindrome-de-prader-willi","status":"publish","type":"post","link":"https:\/\/infoelnuevonorte.com\/?p=106393","title":{"rendered":"D\u00eda Internacional del S\u00edndrome de Prader-Willi"},"content":{"rendered":"<p style=\"text-align: justify;\">Cada 30 de mayo se conmemora el D\u00eda Internacional del S\u00edndrome de Prader-Willi, una fecha que busca concientizar sobre esta compleja enfermedad gen\u00e9tica poco com\u00fan, promover el conocimiento cient\u00edfico y social, y apoyar a las familias y personas que conviven con ella. Esta jornada tambi\u00e9n recuerda la necesidad de avanzar en diagn\u00f3sticos tempranos, tratamientos integrales y pol\u00edticas de inclusi\u00f3n para mejorar la calidad de vida de quienes la padecen.<\/p>\n<h3 class=\"wp-block-heading\" style=\"text-align: justify;\"><strong>\u00bfQu\u00e9 es el S\u00edndrome de Prader-Willi?<\/strong><\/h3>\n<p style=\"text-align: justify;\">El S\u00edndrome de Prader-Willi (PWS, por sus siglas en ingl\u00e9s) es una condici\u00f3n gen\u00e9tica rara que afecta aproximadamente a 1 de cada 15,000 a 30,000 nacimientos. Fue descrito por primera vez en 1956 por los doctores suizos Andrea Prader, Heinrich Willi y Alexis Labhart. Esta alteraci\u00f3n se origina por una falla en la expresi\u00f3n de genes localizados en el cromosoma 15 de origen paterno.<\/p>\n<div class=\"wp-block-image\" style=\"text-align: justify;\">\n<figure class=\"alignleft size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-482790 entered lazyloaded\" title=\"D\u00eda Internacional del S\u00edndrome de Prader-Willi | 2 |\" src=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-683x1024.jpg\" sizes=\"(max-width: 683px) 100vw, 683px\" srcset=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-683x1024.jpg 683w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-261x392.jpg 261w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-64x96.jpg 64w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-128x192.jpg 128w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-150x225.jpg 150w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-300x450.jpg 300w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-696x1044.jpg 696w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg 750w\" alt=\"D\u00eda Internacional del S\u00edndrome de Prader-Willi - Noticias de hoy en Rep\u00fablica Dominicana | De \u00daltimo Minuto\" width=\"683\" height=\"1024\" data-lazy-srcset=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-683x1024.jpg 683w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-261x392.jpg 261w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-64x96.jpg 64w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-128x192.jpg 128w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-150x225.jpg 150w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-300x450.jpg 300w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-696x1044.jpg 696w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg 750w\" data-lazy-sizes=\"(max-width: 683px) 100vw, 683px\" data-lazy-src=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/Dia-Internacional-del-Sindrome-de-Prader-Willi-683x1024.jpg\" data-ll-status=\"loaded\" \/><\/figure>\n<\/div>\n<p style=\"text-align: justify;\">El s\u00edndrome se caracteriza por una serie de manifestaciones f\u00edsicas, cognitivas y conductuales. Las personas con PWS suelen presentar:<\/p>\n<ul class=\"wp-block-list\" style=\"text-align: justify;\">\n<li><strong>Hipoton\u00eda (bajo tono muscular)<\/strong> desde el nacimiento.<\/li>\n<li><strong>Retraso en el desarrollo psicomotor<\/strong>.<\/li>\n<li><strong>Hipogonadismo<\/strong> (desarrollo incompleto de los \u00f3rganos sexuales).<\/li>\n<li><strong>Dificultades de aprendizaje<\/strong> o discapacidad intelectual leve a moderada.<\/li>\n<li><strong>Trastornos conductuales<\/strong>, como rigidez cognitiva, berrinches, ansiedad o comportamientos obsesivos.<\/li>\n<li><strong>Hiperfagia cr\u00f3nica<\/strong>, una necesidad constante de comer que, si no se controla, conduce a obesidad severa.<\/li>\n<li><strong>Baja estatura<\/strong> y manos\/pies peque\u00f1os.<\/li>\n<\/ul>\n<h3 class=\"wp-block-heading\" style=\"text-align: justify;\">\u00bfQu\u00e9 m\u00e9dico trata el s\u00edndrome?<\/h3>\n<p style=\"text-align: justify;\">El manejo del PWS requiere un <strong>enfoque multidisciplinario<\/strong>, ya que afecta distintos sistemas del cuerpo. Entre los especialistas que suelen intervenir est\u00e1n:<\/p>\n<ul class=\"wp-block-list\" style=\"text-align: justify;\">\n<li><strong>Genetista<\/strong>: para confirmar el diagn\u00f3stico.<\/li>\n<li><strong>Endocrin\u00f3logo<\/strong>: ya que los problemas hormonales son frecuentes (d\u00e9ficit de hormona del crecimiento, hipotiroidismo, entre otros).<\/li>\n<li><strong>Nutricionista y endocrin\u00f3logo pedi\u00e1trico<\/strong>: para manejar la hiperfagia y prevenir la obesidad.<\/li>\n<li><strong>Fisioterapeuta<\/strong>: para mejorar el tono muscular y la movilidad.<\/li>\n<li><strong>Psic\u00f3logo y psiquiatra infantil<\/strong>: para el manejo conductual y emocional.<\/li>\n<li><strong>Logopeda y terapeuta ocupacional<\/strong>: para tratar retrasos en el lenguaje y mejorar habilidades sociales y motoras.<\/li>\n<\/ul>\n<h3 class=\"wp-block-heading\" style=\"text-align: justify;\">Diagn\u00f3stico y tratamiento<\/h3>\n<p style=\"text-align: justify;\">El diagn\u00f3stico se realiza mediante pruebas gen\u00e9ticas espec\u00edficas que analizan alteraciones en el cromosoma 15. La detecci\u00f3n temprana, idealmente en los primeros meses de vida, es clave para intervenir precozmente y mejorar el pron\u00f3stico.<\/p>\n<div class=\"wp-block-image\" style=\"text-align: justify;\">\n<figure class=\"alignleft size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-482785 entered lazyloaded\" title=\"D\u00eda Internacional del S\u00edndrome de Prader-Willi | 3 |\" src=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg\" sizes=\"(max-width: 850px) 100vw, 850px\" srcset=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg 850w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-392x261.jpg 392w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-768x512.jpg 768w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-96x64.jpg 96w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-192x128.jpg 192w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-150x100.jpg 150w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-300x200.jpg 300w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-696x464.jpg 696w\" alt=\"D\u00eda Internacional del S\u00edndrome de Prader-Willi\" width=\"850\" height=\"567\" data-lazy-srcset=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg 850w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-392x261.jpg 392w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-768x512.jpg 768w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-96x64.jpg 96w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-192x128.jpg 192w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-150x100.jpg 150w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-300x200.jpg 300w, https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi-696x464.jpg 696w\" data-lazy-sizes=\"(max-width: 850px) 100vw, 850px\" data-lazy-src=\"https:\/\/cdn.deultimominuto.net\/wp-content\/uploads\/2025\/05\/El-Dia-Internacional-del-Sindrome-de-Prader-Willi.jpg\" data-ll-status=\"loaded\" \/>\n<figcaption class=\"wp-element-caption\">D\u00eda Internacional del S\u00edndrome de Prader-Willi<\/figcaption>\n<\/figure>\n<\/div>\n<p style=\"text-align: justify;\">Aunque <strong>no existe cura<\/strong> para el s\u00edndrome de Prader-Willi, los tratamientos son altamente efectivos si se abordan integralmente. Las intervenciones m\u00e1s comunes incluyen:<\/p>\n<ul class=\"wp-block-list\" style=\"text-align: justify;\">\n<li><strong>Terapia con hormona de crecimiento<\/strong>: mejora el desarrollo f\u00edsico, la fuerza muscular y el metabolismo.<\/li>\n<li><strong>Dieta estricta y control del entorno alimentario<\/strong>: para prevenir el sobrepeso.<\/li>\n<li><strong>Estimulaci\u00f3n temprana y educaci\u00f3n especializada<\/strong>: para potenciar habilidades cognitivas y sociales.<\/li>\n<li><strong>Apoyo psicol\u00f3gico continuo<\/strong>: para abordar problemas de conducta, ansiedad o depresi\u00f3n.<\/li>\n<\/ul>\n<h3 class=\"wp-block-heading\" style=\"text-align: justify;\">Calidad de vida y expectativas<\/h3>\n<p style=\"text-align: justify;\">Con un tratamiento adecuado y un entorno familiar y social de apoyo, muchas personas con PWS pueden llevar una vida plena, integrarse al sistema educativo y participar activamente en la comunidad. No obstante, su calidad de vida depende en gran medida del manejo de la hiperfagia y los trastornos conductuales.<\/p>\n<p style=\"text-align: justify;\">El control del acceso a la comida \u2014por medio de ambientes estructurados, rutinas estables y supervisi\u00f3n constante\u2014 es esencial. Adem\u00e1s, la inclusi\u00f3n educativa y laboral, adaptada a sus capacidades, es clave para su desarrollo emocional.<\/p>\n<p style=\"text-align: justify;\">La esperanza de vida puede estar comprometida si no se controla la obesidad y sus complicaciones (diabetes tipo 2, apnea del sue\u00f1o, enfermedades cardiovasculares). Sin embargo, los avances m\u00e9dicos y el seguimiento interdisciplinario han mejorado significativamente el pron\u00f3stico en las \u00faltimas d\u00e9cadas.<\/p>\n<h3 class=\"wp-block-heading\" style=\"text-align: justify;\">Importancia de esta conmemoraci\u00f3n<\/h3>\n<p style=\"text-align: justify;\">El D\u00eda Internacional del S\u00edndrome de Prader-Willi es una oportunidad para romper el silencio y los prejuicios que a\u00fan existen sobre esta condici\u00f3n. Visibilizar este s\u00edndrome ayuda a:<\/p>\n<ul class=\"wp-block-list\" style=\"text-align: justify;\">\n<li>Acelerar diagn\u00f3sticos precoces.<\/li>\n<li>Fomentar la investigaci\u00f3n cient\u00edfica.<\/li>\n<li>Impulsar pol\u00edticas p\u00fablicas de apoyo a la discapacidad.<\/li>\n<li>Crear redes de acompa\u00f1amiento entre familias y profesionales.<\/li>\n<li>Generar una sociedad m\u00e1s emp\u00e1tica e inclusiva.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">Adem\u00e1s, la educaci\u00f3n comunitaria es esencial para evitar estigmatizaciones y brindar oportunidades reales de integraci\u00f3n.<\/p>\n<p style=\"text-align: justify;\">El s\u00edndrome de Prader-Willi plantea desaf\u00edos m\u00e9dicos, sociales y familiares significativos, pero tambi\u00e9n evidencia el poder de la ciencia, el amor familiar y el acompa\u00f1amiento comunitario. En este 30 de mayo, reconocer a las personas con PWS es tambi\u00e9n apostar por un mundo donde cada individuo, con sus particularidades, pueda vivir con dignidad, salud y plenitud. 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https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-768x275.jpg 768w, https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-1536x551.jpg 1536w, https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-1172x420.jpg 1172w, https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-150x54.jpg 150w, https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-696x250.jpg 696w, https:\/\/infoelnuevonorte.com\/wp-content\/uploads\/2025\/11\/Logo-3d-infoenn-con-fondo-blanco-1068x383.jpg 1068w\" sizes=\"(max-width: 240px) 100vw, 240px\" \/><\/a>El Nuevo Norte<\/strong> es un peri\u00f3dico digital dominicano fundado el <strong data-start=\"65\" data-end=\"90\">12 de febrero de 2006<\/strong> por el periodista <strong data-start=\"109\" data-end=\"129\">Junior Henr\u00edquez<\/strong>, quien funge como director y fundador. A trav\u00e9s de la web <strong data-start=\"188\" data-end=\"212\">infoelnuevonorte.com<\/strong>, el medio ofrece informaci\u00f3n veraz y oportuna sobre los acontecimientos sociales, pol\u00edticos, comunitarios y de actualidad general, tanto a nivel nacional como internacional, promoviendo un periodismo responsable, participativo y comprometido con la libre expresi\u00f3n y el fortalecimiento de la democracia informativa.<\/p>\n<\/div><\/div>\n<\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Cada 30 de mayo se conmemora el D\u00eda Internacional del S\u00edndrome de Prader-Willi, una fecha que busca concientizar sobre esta compleja enfermedad gen\u00e9tica poco com\u00fan, promover el conocimiento cient\u00edfico y social, y apoyar a las familias y personas que conviven con ella. Esta jornada tambi\u00e9n recuerda la necesidad de avanzar en diagn\u00f3sticos tempranos, tratamientos integrales [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17,743],"tags":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>D\u00eda Internacional del S\u00edndrome de Prader-Willi | El Nuevo Norte<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/infoelnuevonorte.com\/?p=106393\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00eda Internacional del S\u00edndrome de Prader-Willi | El Nuevo Norte\" \/>\n<meta property=\"og:description\" content=\"Cada 30 de mayo se conmemora el D\u00eda Internacional del S\u00edndrome de Prader-Willi, una fecha que busca concientizar sobre esta compleja enfermedad gen\u00e9tica poco com\u00fan, promover el conocimiento cient\u00edfico y social, y apoyar a las familias y personas que conviven con ella. 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