{"id":3949,"date":"2018-09-05T07:50:36","date_gmt":"2018-09-05T07:50:36","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/05\/feder-se-une-este-fin-de-semana-a-las-familias-que-conviven-con-la-distrofia-muscular-de-duchenne\/"},"modified":"2018-09-05T07:50:36","modified_gmt":"2018-09-05T07:50:36","slug":"feder-se-une-este-fin-de-semana-a-las-familias-que-conviven-con-la-distrofia-muscular-de-duchenne","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/09\/05\/feder-se-une-este-fin-de-semana-a-las-familias-que-conviven-con-la-distrofia-muscular-de-duchenne\/","title":{"rendered":"FEDER se une este fin de semana a las familias que conviven con la Distrofia Muscular de Duchenne"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>FEDER, la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, se adhiere al D\u00eda Internacional de la Distrofia Muscular de Duchenne que se celebra este 7 de septiembre y mostrar su apoyo a todas las familias que conviven con esta enfermedad poco frecuente en nuestro pa\u00eds.<\/p>\n<p>La Distrofia Muscular de Duchenne, que afecta a 1 de cada 3.500 menores en el mundo, se caracteriza por un desorden progresivo del m\u00fasculo que causa la p\u00e9rdida de su funci\u00f3n y, por tanto, conlleva que quienes conviven con ella pierdan totalmente su independencia.<\/p>\n<p>Este 2018, la conmemoraci\u00f3n de esta fecha alcanza su quinto cumplea\u00f1os con el objetivo de ser una jornada de concienciaci\u00f3n y difusi\u00f3n promovida por World Duchenne Organization, la organizaci\u00f3n internacional que re\u00fane las asociaciones que representan a las familias con Duchenne de todo el mundo.<\/p>\n<p>En este marco, desde FEDER quieren poner en valor el trabajo diario del tejido asociativo por apoyar y ayudar a las familias que hacen frente a esta patolog\u00eda. En concreto, reconoce el papel de las siguientes asociaciones para dar visibilidad y mejorar la calidad de vida de los pacientes:<\/p>\n<p>Duchenne Parent Project Espa\u00f1a, la Asociaci\u00f3n Madrile\u00f1a de Enfermedades Neuromusculares, la Associaci\u00f3 Catalana de Persones amb Malaties Neuromusculares, Asociaci\u00f3n de enfermedades neuromusculares de Canarias, la Asociaci\u00f3n de Enfermedades Neuromusculares de C\u00f3rdoba, la Asociaci\u00f3n Humanitaria de Enf. Degenerativas y S\u00edndr. de la Infancia y Adolescencia, la Asociaci\u00f3n de Enfermedades Raras D\u00b4Genes, la Asociaci\u00f3n de Enfermos Neuromusculares de Castilla La Mancha, Associaci\u00f3 Balear d\u00b4infants amb malaties rares, Asociaci\u00f3n Cuenta con nosotros Melilla, la Asociaci\u00f3n Ourensana de EM, ELA, Parkinson y otras Enfermedades Neurodegenerativas, Asociaci\u00f3n Molinense de Enfermedades Raras, Asociaci\u00f3n de discapacitados de Molina de Segura y Vega Media, Asociaci\u00f3n de enfermedades Neuromusculares de Andaluc\u00eda, la Asociaci\u00f3n de Enfermedades Raras de Castilla y Le\u00f3n y la Asociaci\u00f3n riojana de enfermedades raras.<\/p>\n<h3>Sobre la Distrofia Muscular de Duchenne<\/h3>\n<p>La distrofia muscular de Duchenne (DMD) es una enfermedad neuromuscular caracterizada por atrofia y debilidad musculares progresivas, como consecuencia de la degeneraci\u00f3n de los m\u00fasculos esquel\u00e9ticos, lisos y card\u00edacos.<\/p>\n<p>La DMD afecta principalmente al sexo masculino; las mujeres son habitualmente asintom\u00e1ticas, pero un porcentaje peque\u00f1o de mujeres portadoras presenta formas moderadas de la enfermedad.<\/p>\n<p>El inicio de la enfermedad ocurre durante la temprana infancia y los menores afectados pueden mostrar retraso en el desarrollo motor o retraso en el desarrollo global.<\/p>\n<p>La capacidad para caminar se pierde entre los 6 y 13 a\u00f1os de edad, la edad media es de 9,5 a\u00f1os en pacientes no tratados con esteroides. Una vez que la marcha resulta imposible, las contracturas de articulaciones y la escoliosis se desarrollan r\u00e1pidamente. (<span style=\"text-decoration: underline\"><a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Search.php?lng=ES&amp;data_id=13913&amp;Disease_Disease_Search_diseaseGroup=duchenne&amp;Disease_Disease_Search_diseaseType=Pat&amp;Enfermedad(es)\/grupo%20de%20enfermedades=Distrofia-muscular-de-Duchenne&amp;title=Distrofia-muscular-de-Duchenne&amp;search=Disease_Search_Simple\" target=\"_blank\">Orphanet<\/a><\/span>).+<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 05\/09\/2018.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11072-feder-se-une-este-fin-de-semana-a-las-familias-que-conviven-con-la-distrofia-muscular-de-duchenne\" target=\"_blank\">FEDER se une este fin de semana a las familias que conviven con la Distrofia Muscular de Duchenne<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: FEDER, la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, se adhiere al D\u00eda Internacional de la Distrofia Muscular de Duchenne que se celebra este 7 de septiembre y mostrar su apoyo a todas las familias que conviven con esta enfermedad poco frecuente en nuestro pa\u00eds. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-3949","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER se une este fin de semana a las familias que conviven con la Distrofia Muscular de Duchenne - 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\/09\/05\/feder-se-une-este-fin-de-semana-a-las-familias-que-conviven-con-la-distrofia-muscular-de-duchenne\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER se une este fin de semana a las familias que conviven con la Distrofia Muscular de Duchenne - 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: FEDER, la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, se adhiere al D\u00eda Internacional de la Distrofia Muscular de Duchenne que se celebra este 7 de septiembre y mostrar su apoyo a todas las familias que conviven con esta enfermedad poco frecuente en nuestro pa\u00eds. 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