{"id":7007,"date":"2021-04-09T06:59:27","date_gmt":"2021-04-09T06:59:27","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/09\/nos-sumamos-al-dia-mundial-del-sindrome-de-west\/"},"modified":"2021-04-09T06:59:27","modified_gmt":"2021-04-09T06:59:27","slug":"nos-sumamos-al-dia-mundial-del-sindrome-de-west","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/09\/nos-sumamos-al-dia-mundial-del-sindrome-de-west\/","title":{"rendered":"Nos sumamos 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 10 de abril se celebra el D\u00eda Mundial del 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>\u00abDesde FEDER queremos apoyar a las personas que conviven con S\u00edndrome de West y a sus familias, ya que, cada d\u00eda afrontan desaf\u00edos. Adem\u00e1s, en esta jornada queremos aplaudir la labor del tejido asociativo que diariamente trabajan para mejorar la calidad de vida del colectivo\u00bb afirma Juan Carri\u00f3n, presidente de FEDER y su Fundaci\u00f3n.<\/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. 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.<\/p>\n<p>Las principales caracter\u00edsticas de este s\u00edndrome epil\u00e9ptico son: Espasmos epil\u00e9pticos (contracciones s\u00fabitas del cuello, tronco y extremidades y rigidez), 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 las entidades del movimiento asociativo, 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. Asociaciones como la Fundaci\u00f3n S\u00edndrome de West se esfuerzan para apoyar y asesorar a las personas que conviven con esta enfermedad y a sus familiares.<\/p>\n<p>\u00daltima actualizaci\u00f3n 09\/04\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15173-nos-sumamos-al-d%C3%ADa-mundial-del-s%C3%ADndrome-de-west\" target=\"_blank\" rel=\"noopener\">Nos sumamos 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 10 de abril se celebra el D\u00eda Mundial del 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-7007","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos sumamos 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\/2021\/04\/09\/nos-sumamos-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=\"Nos sumamos 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 10 de abril se celebra el D\u00eda Mundial del 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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