{"id":2862,"date":"2019-10-01T20:27:15","date_gmt":"2019-10-02T01:27:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2862"},"modified":"2019-10-01T20:27:15","modified_gmt":"2019-10-02T01:27:15","slug":"william","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"Persona con LGMD: William"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/LGMD1D-William-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2860\"\/><\/figure>\n\n\n\n<p><strong>LGMD \"Primer plano\"<\/strong><\/p>\n\n\n\n<p><strong>Nombre<\/strong>:  William&nbsp;\n<strong>Edad<\/strong>:\n62 a\u00f1os<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n\n\n\n<p><strong>Subtipo LGMD<\/strong>:   LGMD D1 relacionada con DNAJB6 (Antes LGMD tipo 1D)<\/p>\n\n\n\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n\n\n\n<p>Me diagnosticaron cl\u00ednicamente a los 40 a\u00f1os y 5 a\u00f1os m\u00e1s tarde, a los 45, recib\u00ed la confirmaci\u00f3n gen\u00e9tica de mi diagn\u00f3stico de LGMD 1D.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n\n\n\n<p>De ni\u00f1o era lento.  Alrededor de los 45 a\u00f1os, experiment\u00e9 dificultades para correr.<\/p>\n\n\n\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n\n\n\n<p>S\u00ed, mi hermano de 67 a\u00f1os tiene LGMD1D y mi hija tambi\u00e9n.\nhija.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1les cree que son los mayores retos\nde vivir con LGMD<\/strong>:<\/p>\n\n\n\n<p>El mayor reto para m\u00ed ha sido adaptarme a la\ndebilidad y tener que reducir gradualmente el ritmo.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n\n\n\n<p>Mi mayor logro ha sido crear la Fundaci\u00f3n LGMD-1D\nDNAJB6 que es una fundaci\u00f3n p\u00fablica sin \u00e1nimo de lucro cuya misi\u00f3n es\ncuya misi\u00f3n es mantener un lugar central para que las personas diagnosticadas con\nMuscular de Cinturas tipo 1D (LGMD1D) se re\u00fanan, recopilen noticias relevantes y pongan en marcha iniciativas de recaudaci\u00f3n de fondos para avanzar en la lucha contra la LGMD-1D.\nde recaudaci\u00f3n de fondos con el fin de avanzar en la investigaci\u00f3n.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>Tambi\u00e9n he creado un Registro de Pacientes para todos los pacientes diagnosticados con una forma autos\u00f3mica dominante de LGMD.  (LGMD tipo 1)<\/p>\n\n\n\n<p><strong>\u00bfC\u00f3mo ha influido la LGMD en la persona\npersona que eres hoy:<\/strong><\/p>\n\n\n\n<p>La LGMD ha influido en mi vida y en lo que soy hoy.  Reducir la velocidad me ha hecho apreciar lo que hay\nque me rodea, la familia, los amigos y las conexiones.<\/p>\n\n\n\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n\n\n\n<p>Tenemos que seguir corriendo la voz y conectando de forma que se ayude a encontrar una cura.  Por ejemplo, un registro de pacientes con LGMD autos\u00f3mica dominante (LGMD tipo 1) ser\u00e1 vital para la investigaci\u00f3n y la b\u00fasqueda de una cura.<\/p>\n\n\n\n<p><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana mismo, \u00bfqu\u00e9\nser\u00eda lo primero que querr\u00edas hacer<\/strong>:<\/p>\n\n\n\n<p>Si me curara ma\u00f1ana, ir\u00eda a bailar y a jugar al f\u00fatbol con mis nietas.<\/p>\n\n\n\n<p> <\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; William&nbsp; Age: 62 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2860,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[103],"class_list":["post-2862","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d","tag-lgmd-d1-dnajb6-related-united-states-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Individual with LGMD: William - LGMD Awareness Foundation<\/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:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: William - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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