{"id":4328,"date":"2019-04-09T06:29:03","date_gmt":"2019-04-09T06:29:03","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/04\/09\/feder-se-une-al-dia-mundial-del-sindrome-de-west\/"},"modified":"2019-04-09T06:29:03","modified_gmt":"2019-04-09T06:29:03","slug":"feder-se-une-al-dia-mundial-del-sindrome-de-west","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/04\/09\/feder-se-une-al-dia-mundial-del-sindrome-de-west\/","title":{"rendered":"FEDER se une al D\u00eda Mundial del S\u00edndrome de West"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El d\u00eda 10 de abril se celebra el D\u00eda Mundial S\u00edndrome de West y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta jornada de sensibilizaci\u00f3n para visibilizar esta patolog\u00eda y mostrar su solidaridad con todos aquellos pacientes y familiares.<\/p>\n<p>El S\u00edndrome de West, conocida tambi\u00e9n como s\u00edndrome de espasmos infantiles, es una enfermedad neurol\u00f3gica rara y constituye el tipo m\u00e1s frecuente de encefalopat\u00eda epil\u00e9ptica.&nbsp;Su incidencia se estima entre 1 y 1,6\/100.000 nacidos vivos, y suele aparecer m\u00e1s en ni\u00f1os que en ni\u00f1as, siendo el inicio de la enfermedad entre los 3 y los 7 meses de edad en un 50-70 % de los casos. Las principales caracter\u00edsticas de este s\u00edndrome epil\u00e9ptico son:&nbsp;Espasmos epil\u00e9pticos (contracciones s\u00fabitas del cuello, tronco y extremidades y rigidez),&nbsp;Retraso en el desarrollo psicomotor, Hipsarritmias en el electroencefalograma, es decir, un registro de continuas descargas de ondas de alto voltaje y sin sincronizaci\u00f3n en ambos hemisferios del cerebro.<\/p>\n<p>Desde FEDER agradecemos la labor incansable que realizan: La Asociaci\u00f3n de Padres y Tutores de Personas con Par\u00e1lisis Cerebral y Discapacidades Afines de Segovia, la Asociaci\u00f3n de Ni\u00f1os con Discapacidad de Almer\u00eda, Fundaci\u00f3n S\u00edndrome de West, Asociaci\u00f3n de Enfermedades Raras de Castilla y Le\u00f3n, la Asociaci\u00f3n riojana de Enfermedades Raras, la Asociaci\u00f3n Humanitaria de Enfermedades Neurodegenerativa y S\u00edndromes de la Infancia y Adolescencia y la Asociaci\u00f3n de Enfermedades Raras con epilepsia desde la Infancia, que luchan d\u00eda tras d\u00eda para conseguir una mejora en la calidad de vida de los pacientes con s\u00edndrome de West y adem\u00e1s, trabajan sin descanso para visibilizar esta patolog\u00eda.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 09\/04\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12085-feder-se-une-al-d%C3%ADa-mundial-del-s%C3%ADndrome-de-west\" target=\"_blank\" rel=\"noopener noreferrer\">FEDER se une al D\u00eda Mundial del S\u00edndrome de West<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El d\u00eda 10 de abril se celebra el D\u00eda Mundial S\u00edndrome de West y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta jornada de sensibilizaci\u00f3n para visibilizar esta patolog\u00eda y mostrar su solidaridad con todos aquellos pacientes y familiares. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4328","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER se une al D\u00eda Mundial del S\u00edndrome de West - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2019\/04\/09\/feder-se-une-al-dia-mundial-del-sindrome-de-west\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER se une al D\u00eda Mundial del S\u00edndrome de West - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El d\u00eda 10 de abril se celebra el D\u00eda Mundial S\u00edndrome de West y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma a esta jornada de sensibilizaci\u00f3n para visibilizar esta patolog\u00eda y mostrar su solidaridad con todos aquellos pacientes y familiares. 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