{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"INDIVIDUO CON LGMD: Maria"},"content":{"rendered":"
\"Lgmd1b<\/span><\/div>

\u00a0<\/strong><\/p>\n

Nombre<\/strong>: Mar\u00eda Edad<\/strong>29 a\u00f1os<\/p>\n

Pa\u00eds<\/strong>: EE.UU.<\/p>\n

Subtipo LGMD<\/strong>: LGMD 1B<\/p>\n

 <\/p>\n

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

Al principio me diagnosticaron AME a los dos a\u00f1os. A los 15 a\u00f1os me volvieron a diagnosticar distrofia muscular de cinturas.<\/p>\n

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

Mis padres dicen que no camin\u00e9 hasta los 17 meses. Tambi\u00e9n caminaba de puntillas y me ayudaba con los brazos para levantarme cuando era peque\u00f1o.<\/p>\n

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

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

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

Mentalmente: Asumir que no llevamos una vida normal es el mayor reto para m\u00ed. F\u00edsicamente: Aprender a aceptar la progresi\u00f3n cuando noto que algo se debilita.<\/p>\n

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

Sacarme el carn\u00e9 y tener coche propio. El proceso dur\u00f3 dos largos a\u00f1os. Parec\u00eda que nunca hab\u00eda un final a la vista. Tener mi coche ha cambiado mi vida y me ayuda a seguir siendo lo m\u00e1s independiente posible.<\/p>\n

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

Sin duda ha moldeado mi personalidad y lo que soy. Mi personalidad feroz viene de mi determinaci\u00f3n por demostrar a los dem\u00e1s que somos capaces. Mi lado apasionado viene de luchar desde el primer d\u00eda, incluso de ni\u00f1a. Crecer con una discapacidad me ha moldeado de m\u00e1s formas de las que podr\u00eda imaginar. S\u00e9 que esta enfermedad me ha convertido en la Mar\u00eda que todos conocen.<\/p>\n

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

Quiero que la gente sepa que se considera una enfermedad rara, por lo que no existe tratamiento ni cura. Adem\u00e1s, quiero gritar desde las cimas de las monta\u00f1as que no es esclerosis m\u00faltiple.<\/p>\n

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

Correr\u00eda a recoger a mis cinco sobrinas y sobrinos. Ir\u00eda al centro comercial y elegir\u00eda un conjunto sin tener que preocuparme de si estoy demasiado delgada para que me quepa nada. Y luego probablemente ir\u00eda a jugar al putt putt. Es algo que echo de menos y que sol\u00eda ser una gran parte de mi infancia. De ni\u00f1a, mi padre nos llevaba a mis hermanas y a m\u00ed casi todas las semanas, as\u00ed que se convirti\u00f3 en una de mis actividades favoritas.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD:\u00a0 Maria - 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\/2021\/05\/17\/5172\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD:\u00a0 Maria - 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