{"id":1382,"date":"2016-10-26T14:12:37","date_gmt":"2016-10-26T19:12:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1382"},"modified":"2016-10-26T14:12:37","modified_gmt":"2016-10-26T19:12:37","slug":"amie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/","title":{"rendered":"INDIVIDUO CON LGMD: Amie"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n<p><strong>Nombre<\/strong>:  Amie\u00a0 <strong>Edad<\/strong>: 31 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2J-Amie.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1381 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\/10\/LGMD2J-Amie-300x169.png\" alt=\"lgmd2j-amie\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>:  LGMD2J (Titinopat\u00eda)<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n<p>A los 31 a\u00f1os me acaban de diagnosticar LGMD2J, tambi\u00e9n conocida como Titinopat\u00eda.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n<p>Siempre he tenido problemas con las piernas y al andar, pero siempre me dec\u00edan que era por los tendones de Aquiles cortos. Despu\u00e9s de operarme para alargarlos, se me atrofiaron las pantorrillas. Mis m\u00fasculos centrales parec\u00edan d\u00e9biles y siempre pens\u00e9 que era por haber tenido dos ces\u00e1reas. No fue hasta este a\u00f1o que mi cuerpo dio un cambio dr\u00e1stico al debilitarse y no pude ignorarlo m\u00e1s, as\u00ed que me propuse encontrar respuestas.<\/p>\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n<p>No se conocen familiares que padezcan esta enfermedad.<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n<p>Mi LGMD plantea muchos retos. Lucho cada d\u00eda con las actividades cotidianas \"normales\": cruzar una habitaci\u00f3n, levantarme desde una posici\u00f3n sentada, subir un escal\u00f3n o una cuesta, subir a un cami\u00f3n, agacharme, mantener el equilibrio, etc. A veces resulta frustrante. Me pierdo muchas cosas por el dolor constante que siento. Si hago demasiadas cosas (que no son muchas), el dolor me incapacita durante d\u00edas. Tengo que elegir lo que es importante y lo que no. Todo esto afecta tambi\u00e9n a la vida de mi familia, de la que soy responsable. La LGMD me ha quitado parte de mi libertad, lo cual es dif\u00edcil de sobrellevar, pero intento mantener una actitud positiva.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n<p>Mi mayor logro es ser madre, esposa y hermana. Tengo dos hijas preciosas, un marido incre\u00edble y la familia que m\u00e1s me apoya. Ellos son la raz\u00f3n por la que me mantengo positiva y \"lucho como una chica\". Toda mi vida lo \u00fanico que he querido ha sido ser madre y tener una familia que me quisiera. Sin duda, \u00a1he sido bendecida!<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n<p>Aunque mi diagn\u00f3stico es bastante reciente, en el fondo siempre supe que algo iba mal. De hecho, me autodiagnostiqu\u00e9 LGMD antes de que me diagnosticara mi neur\u00f3logo. As\u00ed que cuando llegaron los resultados de las pruebas sent\u00ed una extra\u00f1a alegr\u00eda. Por fin ten\u00eda un diagn\u00f3stico. Siento que me han dado esta enfermedad por una raz\u00f3n para la que a\u00fan no he encontrado respuesta. Creo sinceramente que todo sucede por una raz\u00f3n y que el momento oportuno lo es todo. La LGMD es una enfermedad tan rara que es definitivamente desconocida en mi zona, as\u00ed que voy a investigar todo lo que pueda y defenderla ante tanta gente como sea posible. S\u00e9 que soy fuerte aunque mis m\u00fasculos no lo sean. Disfruto de las peque\u00f1as cosas de la vida y vivo los momentos. Tambi\u00e9n busco lo positivo en cada situaci\u00f3n. La vida es demasiado corta para centrarse en lo negativo.<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n<p>Quiero que el mundo sepa que 1 de cada 43.000 personas padece distrofia muscular de cinturas. Por desgracia, esta enfermedad no tiene cura.  Debido a su rareza, hay menos fondos para la investigaci\u00f3n, lo que me aleja a\u00fan m\u00e1s de recibir una cura. La LGMD puede introducirse en cualquier familia y afecta a la vida diaria. Preveo que esta enfermedad acabar\u00e1 con mi capacidad de andar, \u00a1pero voy a luchar contra ella todo lo que pueda!<\/p>\n<p><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n<p>\u00bfPor d\u00f3nde empezar? Llevar\u00eda a mis hijas a Disney World y luego de excursi\u00f3n a Colorado. Subir\u00eda un tramo de escaleras s\u00f3lo porque puedo. Echo de menos las peque\u00f1as cosas que sol\u00eda hacer, como ir de compras, bailar o incluso ba\u00f1arme. No te das cuenta de la libertad que pierdes hasta que la pierdes.<\/p>\n<p>&nbsp;<\/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:\u00a0 Amie\u00a0 Age: 31 yrs old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1381,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,16],"class_list":["post-1382","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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