{"id":1980,"date":"2018-06-03T16:24:02","date_gmt":"2018-06-03T21:24:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1980"},"modified":"2018-06-03T16:24:02","modified_gmt":"2018-06-03T21:24:02","slug":"anne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","title":{"rendered":"INDIVIDUO CON LGMD: Anne"},"content":{"rendered":"

LGMD \"Entrevista en primer plano\"<\/strong><\/p>\n

Nombre<\/strong>: Anne\u00a0 \u00a0Edad<\/strong>: 56 a\u00f1os\u00a0\u00a0\"\"<\/a><\/p>\n

Pa\u00eds<\/strong>: Estados Unidos<\/p>\n

Subtipo LGMD<\/strong>: LGMD2A - tambi\u00e9n conocida como Calpainopat\u00eda<\/p>\n

\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n

Por tener Distrofia Muscular, me diagnosticaron alrededor de los 4 a\u00f1os de edad. El diagn\u00f3stico espec\u00edfico 2A no se produjo hasta una prueba de ADN a la edad de 46 a\u00f1os.<\/p>\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n

Mi primer s\u00edntoma fue que andaba de puntillas y una sensaci\u00f3n \"visceral\" que ten\u00eda mi madre de que las cosas no iban bien.<\/p>\n

\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n

No, soy la \u00fanica persona de mi familia.<\/p>\n

\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n

Me resulta dif\u00edcil seguir formando parte de la sociedad. No poder entrar en casa de otras personas, subirme al coche e ir o volar f\u00e1cilmente a otros lugares me hace sentir excluida. Cuando me cuesta vestirme y luego oigo hablar de todas las cosas maravillosas que hacen mis amigos y mi familia, es desalentador. Quiero que me incluyan en la vida de la gente y no quedarme siempre mirando desde la barrera.<\/p>\n

\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n

Me siento orgullosa de haberme graduado en la universidad y de haber tenido una carrera de \u00e9xito. Navegar por el mundo empresarial y competir por nuevos puestos fue dif\u00edcil, \u00a1pero pude hacerlo! Aunque ya no puedo trabajar, saber que fui capaz de triunfar mientras mi cuerpo se deterioraba me hace sentir bien.<\/p>\n

\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n

Creo que tener LGMD me ha ense\u00f1ado a priorizar. No s\u00f3lo las tareas, sino tambi\u00e9n las cosas relacionadas con la calidad de vida. Tengo una energ\u00eda limitada y he aprendido a gastarla en cosas que tienen sentido para el panorama general. Los platos sucios en el fregadero no son tan importantes como pasar tiempo con mi marido o con un amigo.<\/p>\n

Tambi\u00e9n creo que mis propias dificultades me han ayudado a ser m\u00e1s compasiva con los dem\u00e1s.<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n

Me gustar\u00eda que supieran lo debilitante que es y que se puede curar. Con contribuciones a la investigaci\u00f3n, otros pueden ayudarnos a curar esta enfermedad.<\/p>\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n

Correr\u00eda hacia mi marido y le dar\u00eda un abrazo enorme.<\/p>\n

 <\/p>\n

*** Por favor, dale al LIKE, COMENTA y COMPARTE este post para ayudar a concienciar sobre la LGMD.<\/p>\n

 <\/p>\n

*** Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1981,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1980","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":"\nINDIVIDUAL WITH LGMD: Anne - 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\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anne - 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