{"id":3467,"date":"2018-01-18T07:01:06","date_gmt":"2018-01-18T07:01:06","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/18\/nos-unimos-a-las-familias-con-hemiplejia-alternante-en-su-dia-mundial\/"},"modified":"2018-01-18T07:01:06","modified_gmt":"2018-01-18T07:01:06","slug":"nos-unimos-a-las-familias-con-hemiplejia-alternante-en-su-dia-mundial","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/18\/nos-unimos-a-las-familias-con-hemiplejia-alternante-en-su-dia-mundial\/","title":{"rendered":"Nos unimos a las familias con Hemiplejia Alternante en su D\u00eda Mundial"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Desde FEDER nos adherimos al D\u00eda Internacional del S\u00edndrome de la Hemiplejia Alternante. Esta jornada, que se celebra cada 18 de enero, pretende sensibilizar a la sociedad sobre esta enfer medad neurol\u00f3gica y poco frecuente.<\/p>\n<p>Este s\u00edndrome se caracteriza por episodios repetidos de hemiplejia (par\u00e1lisis de un lado del cuerpo) que se producen alternativamente en una parte del cuerpo o en ambas. Estas par\u00e1lisis pueden durar desde varios minutos a varios d\u00edas, desaparecen con el sue\u00f1o y se pueden volver a dar cuando el paciente despierta. La enfermedad suele presentarse al poco tiempo de nacer, en torno a los 18 meses.<\/p>\n<p>Adem\u00e1s, otras manifestaciones de la Hemiplejia Alternante son epilepsia, retraso en el desarrollo, d\u00e9ficit intelectual, ataques t\u00f3nicos (rigidez), ataxia (trastorno en la coordinaci\u00f3n de los movimientos), diston\u00eda (contracciones musculares) o movimientos oculares anormales. Los episodios de hemiplej\u00eda suelen disminuir con la edad. Hasta la fecha, el tratamiento disponible es capaz de reducir la duraci\u00f3n e intensidad de las crisis.<\/p>\n<p>\u201cHoy, nos sumamos a todas las personas que conviven con esta patolog\u00eda y con sus familiares\u201d, ha indicado Juan Carri\u00f3n, Presidente de nuestra Federaci\u00f3n y Fundaci\u00f3n, quien ha incidido en la importancia que la investigaci\u00f3n tiene a la hora de prevenir y abordar enfermedades poco frecuentes como la Hemiplejia Alternante.<\/p>\n<p>En un d\u00eda como \u00e9ste, tambi\u00e9n queremos destacar la labor de <span style=\"text-decoration: underline\"><a href=\"http:\/\/aesha.org\/en\/home\/\" target=\"_blank\">AESHA<\/a><\/span>, la Asociaci\u00f3n Espa\u00f1ola del S\u00edndrome de la Hemiplejia Alternante por mejorar la calidad de vida de estos pacientes y de sus familias. Para ello, les ofrece informaci\u00f3n veraz y contrastada sobre la patolog\u00eda, favorece el intercambio de experiencias de las familias, fomenta su investigaci\u00f3n y est\u00e1 en contacto con diferentes asociaciones que representan la Hemiplej\u00eda Alternante en el mundo.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 18\/01\/2018.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9920-nos-unimos-a-las-familias-con-hemiplejia-alternante-en-su-d%C3%ADa-mundial\" target=\"_blank\">Nos unimos a las familias con Hemiplejia Alternante en su D\u00eda Mundial<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Desde FEDER nos adherimos al D\u00eda Internacional del S\u00edndrome de la Hemiplejia Alternante. Esta jornada, que se celebra cada 18 de enero, pretende sensibilizar a la sociedad sobre esta enfer medad neurol\u00f3gica y poco frecuente. Este s\u00edndrome se caracteriza por episodios repetidos de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3467","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos unimos a las familias con Hemiplejia Alternante en su D\u00eda Mundial - 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\/2018\/01\/18\/nos-unimos-a-las-familias-con-hemiplejia-alternante-en-su-dia-mundial\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos unimos a las familias con Hemiplejia Alternante en su D\u00eda Mundial - 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: Desde FEDER nos adherimos al D\u00eda Internacional del S\u00edndrome de la Hemiplejia Alternante. 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