{"id":4445,"date":"2019-05-31T09:03:53","date_gmt":"2019-05-31T09:03:53","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/31\/nos-adherimos-al-dia-nacional-contra-la-miastenia-gravis\/"},"modified":"2019-05-31T09:03:53","modified_gmt":"2019-05-31T09:03:53","slug":"nos-adherimos-al-dia-nacional-contra-la-miastenia-gravis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/31\/nos-adherimos-al-dia-nacional-contra-la-miastenia-gravis\/","title":{"rendered":"Nos adherimos al D\u00eda Nacional contra la Miastenia Gravis"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>El 2 de junio se celebra el D\u00eda Nacional contra la Miastenia Gravis, una enfermedad poco frecuente con la que conviven cerca de 15.000 personas en Espa\u00f1a. Esta jornada es esencial para los pacientes y familiares ya que, es una jornada de concienciaci\u00f3n a la sociedad sobre esta enfermedad poco frecuente. Por ello, FEDER queremos&nbsp;mostrar todo nuestra fuerza a los pacientes con Miastenia Gravis y a sus familiares, que se convierten en un pilar fundamental para ellos. Adem\u00e1s, recordamos que la importancia de que industria farmac\u00e9utica, profesionales sanitarios y administraci\u00f3n trabajen junto a las entidad para mejorar la calidad de vida de las personas que tienen esta enfermedad poco frecuente.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Mesas informativas en Asturias por el D\u00eda Nacional<\/span><\/span><\/p>\n<p>Desde FEDER destacamos la labor que realiza la Asociaci\u00f3n de Afectados de Miastenia Gravis o Autoinmune de Asturias que se esfuerzan a diario para reunir a los pacientes en un espacio com\u00fan para conocer las necesidades de las personas que conviven con esta enfermedad poco frecuente. Adem\u00e1s, realizan campa\u00f1as de sensibilizaci\u00f3n para informar sobre su enfermedad y tratamiento, iniciativas como la que van a realizar el pr\u00f3ximo 3 de junio, con motivo del D\u00eda Nacional, en el Hospital de Oviedo y en el de Gij\u00f3n, donde organizar\u00e1n unas mesas informativas donde todo aquel interesado podr\u00e1 acercarse para conocer m\u00e1s sobre esta enfermedad.<\/p>\n<p>Adem\u00e1s, tambi\u00e9n queremos aplaudir la implicaci\u00f3n de entidades como, la Asociaci\u00f3n de Enfermos Neuromusculares de Bizkaia, la Asociaci\u00f3n de Enfermos Neuromusculares de Castilla La Mancha, la Asociaci\u00f3n de enfermedades Neuromusculares de Andaluc\u00eda, la Asociaci\u00f3n de Enfermedades Raras de Guadalajara, la Asociaci\u00f3n Grupo de Enfermedades Raras de Navarra, la Asociaci\u00f3n de Enfermedades Neuromusculares de C\u00f3rdoba (ASENCO) y la Asociaci\u00f3n Lupus de M\u00e1laga y Autoinmunes, ya que, todas ellas ofrecen lo mejor de cada una y trabajan sin descanso para visibilizar las enfermedades poco <span style=\"font-size: 10pt\">frecuentes y en concreto, la Miastenia Gravis<\/span><\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es la Miastenia Gravis?<\/span><\/span><\/p>\n<p>La miastenia gravis es una enfermedad de la Uni\u00f3n Neuromuscular (UNM), por lo general cr\u00f3nica, autoinmune, que se caracteriza por perdida muscular, s\u00edntomas que aparecen o empeoran con el ejercicio; la agravaci\u00f3n varia a lo largo del d\u00eda, por lo general empeora en la tarde noche. Igualmente se agrava con la administraci\u00f3n de determinados medicamentos.<\/p>\n<p>Puede afectar a cualquier persona sin distinci\u00f3n de sexo, edad, raza o condici\u00f3n social.<\/p>\n<p>Los s\u00edntomas m\u00e1s frecuentes son: Visi\u00f3n doble, parpados ca\u00eddos, p\u00e9rdida de expresi\u00f3n facial, dificultades para articular palabras, trastornos para masticar y tragar, debilidad en brazos y piernas.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 31\/05\/2019<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12431-nos-adherimos-al-d%C3%ADa-nacional-contra-la-miastenia-gravis\" target=\"_blank\" rel=\"noopener noreferrer\">Nos adherimos al D\u00eda Nacional contra la Miastenia Gravis<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El 2 de junio se celebra el D\u00eda Nacional contra la Miastenia Gravis, una enfermedad poco frecuente con la que conviven cerca de 15.000 personas en Espa\u00f1a. Esta jornada es esencial para los pacientes y familiares ya que, es una jornada de [&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-4445","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 adherimos al D\u00eda Nacional contra la Miastenia Gravis - 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\/05\/31\/nos-adherimos-al-dia-nacional-contra-la-miastenia-gravis\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos adherimos al D\u00eda Nacional contra la Miastenia Gravis - 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 2 de junio se celebra el D\u00eda Nacional contra la Miastenia Gravis, una enfermedad poco frecuente con la que conviven cerca de 15.000 personas en Espa\u00f1a. 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