{"id":3233,"date":"2017-09-29T09:33:13","date_gmt":"2017-09-29T09:33:13","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/09\/29\/nos-sumamos-al-dia-de-la-distrofia-muscular-de-cinturas-tipo-1f\/"},"modified":"2017-09-29T09:33:13","modified_gmt":"2017-09-29T09:33:13","slug":"nos-sumamos-al-dia-de-la-distrofia-muscular-de-cinturas-tipo-1f","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/09\/29\/nos-sumamos-al-dia-de-la-distrofia-muscular-de-cinturas-tipo-1f\/","title":{"rendered":"Nos sumamos al D\u00eda de la Distrofia Muscular de Cinturas Tipo 1F"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p><p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">El D\u00eda Mundial de la Distrofia Muscular de Cinturas Tipo 1F se celebra el 30 de septiembre y nos solidarizamos con esta jornada que pretende informar sobre esta enfermedad poco frecuente. Esta patolog\u00eda causa debilidad en los m\u00fasculos de la zona p\u00e9lvica y escapular (lugar donde se sit\u00faan los huesos a ambos lados de la espalda y se articulan los h\u00fameros y las clav\u00edculas).<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">Pertenece al grupo de las distrofias musculares, patolog\u00edas hereditarias que afectan a esa zona del cuerpo. En concreto, la Distrofia Muscular de Cinturas Tipo 1F se descubri\u00f3 hace menos de 20 a\u00f1os y las investigaciones han sabido que, en algunas familias, esta enfermedad existe desde hace ocho generaciones.<br \/>Al igual que el resto de Distrofias, es de car\u00e1cter progresivo y empeora con el tiempo. Causa una disminuci\u00f3n del volumen y de la fuerza muscular de la persona, que termina por necesitar una silla de ruedas. Los s\u00edntomas iniciales aparecen, frecuentemente, en la infancia o adolescencia.<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">Desde FEDER, Juan Carri\u00f3n, Presidente de la Federaci\u00f3n y de su Fundaci\u00f3n, informa sobre \u201cla importancia de investigar esta enfermedad con el objetivo de logar un tratamiento para esta enfermedad rara\u201d. Actualmente, varias l\u00edneas de investigaci\u00f3n se encuentran abiertas. Carri\u00f3n tambi\u00e9n considera \u201cnecesario dar a conocer las distrofias musculares entre la poblaci\u00f3n, ya que todav\u00eda existe desconocimiento\u201d.<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">Queremos resaltar el trabajo que realiza la Asociaci\u00f3n Conquistando Escalones en su tarea por dar a conocer esta enfermedad entre la poblaci\u00f3n, sensibilizar al respecto y recaudar fondos para fomentar su investigaci\u00f3n en Espa\u00f1a, adem\u00e1s de ofrecer apoyo y ayuda a los pacientes y familiares que conviven con esta patolog\u00eda para mejorar su calidad de vida.<\/p>\n<p style=\"font-weight: normal;font-style: normal;font-size: 11.97px;line-height: 15.561px\">\u00daltima actualizaci\u00f3n: 29 de septiembre de 2017.<\/p>\n<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9156-nos-sumamos-al-d%C3%ADa-de-la-distrofia-muscular-de-cinturas-tipo-1f\" target=\"_blank\">Nos sumamos al D\u00eda de la Distrofia Muscular de Cinturas Tipo 1F<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; El D\u00eda Mundial de la Distrofia Muscular de Cinturas Tipo 1F se celebra el 30 de septiembre y nos solidarizamos con esta jornada que pretende informar sobre esta enfermedad poco frecuente. Esta patolog\u00eda causa debilidad en los m\u00fasculos de la zona p\u00e9lvica [&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-3233","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 sumamos al D\u00eda de la Distrofia Muscular de Cinturas Tipo 1F - 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\/2017\/09\/29\/nos-sumamos-al-dia-de-la-distrofia-muscular-de-cinturas-tipo-1f\/\" \/>\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 de la Distrofia Muscular de Cinturas Tipo 1F - 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 D\u00eda Mundial de la Distrofia Muscular de Cinturas Tipo 1F se celebra el 30 de septiembre y nos solidarizamos con esta jornada que pretende informar sobre esta enfermedad poco frecuente. 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