{"id":1330,"date":"2016-09-23T09:22:39","date_gmt":"2016-09-23T14:22:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1330"},"modified":"2016-09-23T09:22:39","modified_gmt":"2016-09-23T14:22:39","slug":"tony","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/09\/23\/tony\/","title":{"rendered":"INDIVIDUO CON LGMD: Tony"},"content":{"rendered":"<p>LGMD \"Entrevista en primer plano\"<\/p>\n<p><strong>Nombre<\/strong>: Tony \u00a0<strong>Edad<\/strong>:\u00a0 32<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2i-Tony-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1329 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2i-Tony-H-300x169.png\" alt=\"lgmd2i-tony-h\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>: LGMD2i<\/p>\n<p>&nbsp;<\/p>\n<p><strong>A QU\u00c9 EDAD LE DIAGNOSTICARON<\/strong>:<\/p>\n<p>Me diagnosticaron LGMD alrededor de los 26 a\u00f1os en la Cl\u00ednica Cleveland y luego me diagnosticaron oficialmente 2i el a\u00f1o pasado mediante pruebas gen\u00e9ticas.<\/p>\n<p><strong>\u00bfCU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS?<\/strong>:<\/p>\n<p>Echando la vista atr\u00e1s, siempre me cost\u00f3 seguir un poco el ritmo de otros chicos mientras hac\u00eda deporte, senderismo, corr\u00eda, etc. Mis primeros s\u00edntomas perceptibles de que \"algo podr\u00eda estar pasando\" empezaron a aparecer cuando estaba de gira por el pa\u00eds con grupos de m\u00fasica y cargando el equipo todas las noches, hace unos 10 a\u00f1os. Empec\u00e9 a tener dificultades para hacer cosas con las que nunca hab\u00eda tenido problemas antes (subir escaleras sin usar un pasamanos, cargar equipos grandes, etc.) Continu\u00e9 notando que las cosas peque\u00f1as se volv\u00edan m\u00e1s dif\u00edciles durante la universidad, pero (por supuesto) lo ignor\u00e9 durante a\u00f1os.<\/p>\n<p><strong>\u00bfTIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA? <\/strong><\/p>\n<p>No. S\u00f3lo yo.<\/p>\n<p><strong>\u00bfCU\u00c1LES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LGMD?<\/strong>:<\/p>\n<p>Ajustarme, adaptarme y renunciar a cosas que me gustaban mucho. Tener que ser extremadamente cuidadoso con cada movimiento. Echo mucho de menos cosas como salir a correr (aunque no sea con mucha gracia), caminar para hacer la compra y simplemente ir del punto A al punto B sin inhibiciones.<\/p>\n<p><strong>\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>:<\/p>\n<p>Terminar la universidad despu\u00e9s de dejarla en suspenso para dedicarme a la m\u00fasica y viajar por todas partes con mis amigos. Escribir comedia para una pel\u00edcula independiente, una serie web y un libro. Mudarme a Los \u00c1ngeles y seguir\/realizar una carrera en el mundo del espect\u00e1culo\/medios de comunicaci\u00f3n y casarme con la persona m\u00e1s perfecta del mundo para m\u00ed.<\/p>\n<p><strong>\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY? <\/strong><\/p>\n<p>Ha mejorado mucho mi capacidad para resolver problemas, haci\u00e9ndome m\u00e1s ingenioso, creativo y paciente. He podido aplicarlo a mi carrera y a otros aspectos de mi vida, lo que me ha convertido en un mejor compa\u00f1ero de equipo, amigo, marido y persona creativa. Al menos eso creo, y espero que otros est\u00e9n de acuerdo.<\/p>\n<p><strong>\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGM? <\/strong><\/p>\n<p>Un buen comienzo ser\u00eda conseguir que todo el mundo supiera que realmente existe. Que es una gran lucha para los afectados, pero que muchos de nosotros llevamos una vida feliz y productiva, y que hay tratamientos y curas en el horizonte que nos encantar\u00eda que todo el mundo nos ayudara y comprendiera para llevarlos a la meta.<\/p>\n<p><strong>SI MA\u00d1ANA SE PUDIERA \"CURAR\" SU DGML, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE DESEAR\u00cdA HACER?<\/strong>:<\/p>\n<p>T\u00edo... pienso en esto constantemente, as\u00ed que ya tengo el d\u00eda planeado: Llevar\u00eda a mi perro a dar un largo paseo (\u00bftal vez a correr?). Llevar\u00eda la compra a casa en vez de tener que cargar con ella a mi mujer. Jugar\u00eda al hacky sack con algunos universitarios y quiz\u00e1 probar\u00eda eso del \"senderismo\" que tanto parece gustar a la gente de Los \u00c1ngeles.<\/p>\n<p>**********<\/p>\n<p>Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d Name: Tony \u00a0Age:\u00a0 32 Country: United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1329,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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