{"id":4475,"date":"2019-06-19T09:08:57","date_gmt":"2019-06-19T09:08:57","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/19\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\/"},"modified":"2019-06-19T09:08:57","modified_gmt":"2019-06-19T09:08:57","slug":"nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/19\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\/","title":{"rendered":"Nos sumamos al D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 20 de junio se celebra el D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n nos sumamos al esfuerzo de las asociaciones por visibilizar las necesidades comunes de los pacientes.<\/p>\n<p>Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) nos unimos para apoyar a todos esos pacientes que conviven con Distrofia Muscular FacioEscapuloHumeral y a sus familiares. Por otro lado, queremos difundir la necesidad de la creaci\u00f3n de un registro real de pacientes con esta patolog\u00eda, para conocer el dato concreto de cu\u00e1ntas personas tiene en Espa\u00f1a esta enfermedad<\/p>\n<p>Las entidades trabajan de forma incansable para mejorar la calidad de vida de estos pacientes ya que, con su labor, tratan de buscar terapias paliativas para esta enfermedad, realizan actividades de concienciaci\u00f3n para que la sociedad conozca m\u00e1s acerca de la Distrofia Muscular Facioescapulohumeral, adem\u00e1s de implicar a los profesionales sanitarios y expertos para potenciar la investigaci\u00f3n y de esta forma, conseguir un tratamiento efectivo para esta enfermedad poco frecuente. Todo esto es posible gracias a la implicaci\u00f3n de asociaciones como Asociaci\u00f3n FacioEscapuloHumeral Espa\u00f1a (FSHD Espa\u00f1a), la Asociaci\u00f3n de enfermedades Neuromusculares de Andaluc\u00eda y Asociaci\u00f3n de Enfermos Neuromusculares de Bizkaia.<\/p>\n<p><span style=\"font-size: 12pt\">Campa\u00f1a de visibilizaci\u00f3n \u2018Salva nuestra sonrisa\u2019<\/span><\/p>\n<p>La Asociaci\u00f3n FacioEscapuloHumeral Espa\u00f1a organiza una campa\u00f1a de sensibilizaci\u00f3n a trav\u00e9s de las redes sociales que tiene como eslogan \u2018Salva nuestra sonrisa\u2019, donde animan a la sociedad a subir una foto con un gajo de naranja simulando una sonrisa. Adem\u00e1s, tambi\u00e9n recuerdan etiquetar el selfie con #WorldFSHDay para que esta iniciativa llegue cada vez a m\u00e1s gente.<\/p>\n<p><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es la FSHD?<\/span><\/p>\n<p>La Distrofia muscular facioescapulohumeral o FSHD es el m\u00e1s prevalente de los nueve tipos primarios de distrofia muscular que afectan a adultos y ni\u00f1os.<\/p>\n<p>La distrofia muscular es una enfermedad gen\u00e9tica, hereditaria del m\u00fasculo que causa debilidad muscular progresiva. La FSHD tambi\u00e9n se caracteriza ampliamente como una enfermedad neuromuscular (NMD).<\/p>\n<p>El s\u00edntoma principal de la FSHD es el debilitamiento progresivo y la p\u00e9rdida de los m\u00fasculos esquel\u00e9ticos. La localizaci\u00f3n habitual de estas debilidades en el inicio es el origen del nombre: cara (facio), cintura escapular (escapulo) y brazos (humeral). Las debilidades tempranas de los m\u00fasculos del ojo (abierto y cerrado) y de la boca (sonrisa, fruncir los labios, silbido) son distintivas para la FSHD.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 19\/06\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12552-nos-sumamos-al-d%C3%ADa-mundial-de-la-distrofia-muscular-facioescapulohumeral\" target=\"_blank\" rel=\"noopener noreferrer\">Nos sumamos al D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 20 de junio se celebra el D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n nos sumamos al esfuerzo de las asociaciones por visibilizar las necesidades comunes [&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-4475","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 de la Distrofia Muscular FacioEscapuloHumeral - 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\/06\/19\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\/\" \/>\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 de la Distrofia Muscular FacioEscapuloHumeral - 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: El 20 de junio se celebra el D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral que tiene como objetivo primordial sensibilizar a la poblaci\u00f3n sobre esta enfermedad poco frecuente. Por esta raz\u00f3n nos sumamos al esfuerzo de las asociaciones por visibilizar las necesidades comunes [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2019\/06\/19\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\/\" \/>\n<meta property=\"og:site_name\" content=\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asociacionsindromecharge\" \/>\n<meta property=\"article:published_time\" content=\"2019-06-19T09:08:57+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"98\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Charge\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:site\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Charge\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Nos sumamos al D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral\",\"datePublished\":\"2019-06-19T09:08:57+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/\"},\"wordCount\":464,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2019\\\/06\\\/19\\\/nos-sumamos-al-dia-mundial-de-la-distrofia-muscular-facioescapulohumeral\\\/\",\"name\":\"Nos sumamos al D\u00eda Mundial de la Distrofia Muscular FacioEscapuloHumeral - 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