{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"INDIVIDUO CON LGMD: Andrea"},"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\/01\/LGMD2A-Andrea-L-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2360\"\/><\/figure>\n\n\n\n<p><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n\n\n\n<p><strong>Nombre<\/strong>:  Andrea&nbsp; <strong>Edad<\/strong>24 a\u00f1os<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n\n\n\n<p><strong>Subtipo LGMD<\/strong>:  LGMD2A - una forma de Calpainopat\u00eda <\/p>\n\n\n\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n\n\n\n<p>Me lo diagnosticaron a los 11 a\u00f1os.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n\n\n\n<p>A los 8 a\u00f1os, no pod\u00eda mantenerme en pie con los talones en el suelo y\npoco despu\u00e9s empec\u00e9 a caminar de puntillas. Poco despu\u00e9s empec\u00e9 a caminar de puntillas.\ny las caderas.<\/p>\n\n\n\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n\n\n\n<p>No, soy el \u00fanico familiar diagnosticado de LGMD.<\/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>No poder usar Uber.<\/p>\n\n\n\n<p>La naturaleza progresiva de la enfermedad es un reto. He tenido\ntenido que adaptarme a la p\u00e9rdida de ciertas capacidades con el tiempo, y es dif\u00edcil\nsaber que estas p\u00e9rdidas continuar\u00e1n. Por ejemplo, de ni\u00f1o pod\u00eda andar,\nusaba un Segway para moverme en la adolescencia y ahora uso una silla de ruedas.\nsilla de ruedas. Para m\u00ed, las adaptaciones m\u00e1s dif\u00edciles han sido no poder\nvisitar las casas de mis amigos, porque casi siempre tienen escalones.\ntocar los instrumentos musicales que antes me gustaban.<\/p>\n\n\n\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n\n\n\n<p>Me siento afortunada de haber encontrado en la universidad un \u00e1rea de estudio que me apasiona y que puedo seguir con LGMD. Estoy orgullosa de m\u00ed misma por haberme mudado a un nuevo estado para estudiar bioestad\u00edstica y vivir de forma independiente. Pero de <g class=\"gr_ gr_5 gr-alert gr_gramm gr_inline_cards gr_run_anim Punctuation only-ins replaceWithoutSep\" id=\"5\" data-gr-id=\"5\">curso<\/g> varias personas me han ayudado a lo largo del camino (os quiero mam\u00e1 y <g class=\"gr_ gr_12 gr-alert gr_gramm gr_inline_cards gr_run_anim Style multiReplace\" id=\"12\" data-gr-id=\"12\">pap\u00e1 <\/g><g class=\"gr_ gr_12 gr-alert gr_gramm gr_inline_cards gr_disable_anim_appear Style multiReplace\" id=\"12\" data-gr-id=\"12\">:<\/g>).<\/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>A veces la vida te plantea retos que no puedes cambiar,\npero el proceso de afrontarlos puede ser muy gratificante.\nVivir con LGMD me ha hecho una persona m\u00e1s fuerte en muchos aspectos, a pesar de mi debilidad f\u00edsica.\ndebilidad f\u00edsica. Tambi\u00e9n me ha ense\u00f1ado el valor de la vulnerabilidad y de aceptar la tristeza para experimentar plenamente la alegr\u00eda.\ntristeza para experimentar plenamente la alegr\u00eda. En realidad, puede que la pel\u00edcula \"Del rev\u00e9s\nme ense\u00f1\u00f3 eso...<\/p>\n\n\n\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n\n\n\n<p>Todo el mundo deber\u00eda ver la charla TED de Stella Young titulada \"I am\ntu inspiraci\u00f3n, muchas gracias\". Comparte un gran mensaje sobre\nla explotaci\u00f3n de las personas con discapacidad. Creo que la gran mayor\u00eda\nde nosotros en esta tierra lo hacemos lo mejor que podemos a pesar de los traumas que hemos sufrido.\nsufrido. Para los que tenemos discapacidades f\u00edsicas, ese trauma es un poco m\u00e1s evidente a simple vista.\nun poco m\u00e1s evidente a simple vista.<\/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>Esta pregunta es la m\u00e1s dif\u00edcil para m\u00ed. Nunca he sentido\nhe sentido celos de la gente que corre, hace senderismo o va al gimnasio. Yo\nprobablemente ir\u00eda a la escuela pero usar\u00eda las escaleras en vez del ascensor. Pero\nes una respuesta aburrida. Tal vez ser\u00eda m\u00e1s dram\u00e1tico; podr\u00eda vender mi silla de ruedas\ny usar el dinero para llevar a mi familia a Europa. Poder ir al ba\u00f1o\nen un avi\u00f3n podr\u00eda ser emocionante. Pero echar\u00eda de menos el trato especial que conlleva\ncon el uso de una silla de ruedas. Ser diferente tiene sus ventajas.<\/p>\n\n\n\n<p>*** Por favor, ME GUSTA, COMENTA y COMPARTE este post para ayudar a crear\n\u00a1la LGMD!<\/p>\n\n\n\n<p>*** Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"https:\/\/www.lgmd-info.org\/spotlight-interviews (se abre en una nueva pesta\u00f1a)\">https:\/\/www.lgmd-info.org\/spotlight-interviews <\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:&nbsp; Andrea&nbsp; Age: 24 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"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: Andrea - 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=\"http:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:&nbsp; 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