{"id":1378,"date":"2016-10-11T11:29:46","date_gmt":"2016-10-11T16:29:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1378"},"modified":"2016-10-11T11:29:46","modified_gmt":"2016-10-11T16:29:46","slug":"anna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/","title":{"rendered":"INDIVIDUO CON LGMD: Anna"},"content":{"rendered":"<p><strong>ENTREVISTA DE LGMD SPOTLIGHT<\/strong><\/p>\n<p><strong>Nombre<\/strong>:  Anna \u00a0\u00a0<strong>Edad<\/strong>:   36 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2i-Anna.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1376 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\/LGMD2i-Anna-300x169.png\" alt=\"lgmd2i-anna\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Canad\u00e1<\/p>\n<p><strong>Subtipo LGMD<\/strong>:  LGMD2I<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n<p>Inicialmente me diagnosticaron una \"miopat\u00eda muscular no espec\u00edfica\" cuando era peque\u00f1o (en alg\u00fan momento de la escuela primaria). M\u00e1s adelante, cuando ten\u00eda 26 a\u00f1os, me dieron un \"diagn\u00f3stico provisional\" de LGMD. Finalmente, a los 36 a\u00f1os, me diagnosticaron formalmente \/ cl\u00ednicamente LGMD 2I mediante pruebas gen\u00e9ticas.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n<p>No estoy muy segura de cu\u00e1les fueron mis primeros s\u00edntomas porque, aunque tuve esta enfermedad desde que nac\u00ed, mis padres nunca me hablaron de ella. Cre\u00edan que, como mis s\u00edntomas no afectaban a mi vida desde el punto de vista m\u00e9dico, no era necesario insistir en ellos. En retrospectiva, si tuviera que adivinar, mis primeros s\u00edntomas (que yo recuerde) fueron caminar con los dedos de los pies y dolor en las pantorrillas. Tambi\u00e9n recuerdo que no pod\u00eda participar f\u00e1cilmente en algunas actividades de gimnasia, como correr a campo traviesa y hacer gimnasia.<\/p>\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n<p>Tengo tres hermanos. Es interesante, los dos hermanos m\u00e1s cercanos en edad a m\u00ed est\u00e1n afectados con LGMD pero mi hermano m\u00e1s joven (que es siete a\u00f1os m\u00e1s joven) no est\u00e1 afectado en absoluto y, de hecho, es extremadamente atl\u00e9tico.<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n<p>Para m\u00ed, el primer gran reto son las necesidades siempre cambiantes de esta enfermedad: \u00a1a veces es dif\u00edcil seguir el ritmo! Por ejemplo, te acostumbras a hacer una tarea de una forma y, de repente, un d\u00eda ya no puedes hacerla de esa forma (o puede que descubras que ya no puedes hacer esa tarea en absoluto). Tambi\u00e9n puedes comprar un equipo que te ayude y que funcione durante un tiempo, pero llega un momento en que ya no te sirve y tienes que comprar otro equipo o pensar en otra cosa.<\/p>\n<p>Para m\u00ed, el segundo mayor reto de vivir con LGMD es no saber c\u00f3mo afectar\u00e1 esta enfermedad a tu futuro. Cada persona evoluciona de forma diferente, a distintos grados y ritmos, por lo que es dif\u00edcil prever cu\u00e1les ser\u00e1n tus necesidades futuras o planificar cualquier tipo de futuro, porque f\u00edsicamente no sabes en qu\u00e9 estado te encontrar\u00e1s.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n<p>Trabajo muy duro para vivir una vida plena, as\u00ed que me resulta dif\u00edcil nombrar un logro. A veces, viviendo con una enfermedad, el mero hecho de levantarme de la cama me parece mi mayor logro J Pero, hablando en serio, soy madre de dos hijos (uno biol\u00f3gico y otro adoptado), as\u00ed que verlos crecer me da una alegr\u00eda tremenda y me produce una inmensa sensaci\u00f3n de logro.  Tambi\u00e9n fui p\u00e1rroco durante casi diez a\u00f1os y tuve el gran honor de acompa\u00f1ar a la gente en sus momentos m\u00e1s dif\u00edciles. Saber que he podido ayudarles a atravesar esos momentos dif\u00edciles (aunque fuera en peque\u00f1a medida) me llena de orgullo.<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n<p>La LGMD ha influido en mi vida de muchas maneras.  Me ha ense\u00f1ado a adaptarme a mi entorno. Creo que, cuando vives con esta enfermedad, aprendes de forma natural a pensar con originalidad.<\/p>\n<p>Tambi\u00e9n me ha ense\u00f1ado a no obsesionarme, porque cuando te obsesionas te sientes \"atascado\", lo cual no es \u00fatil ni saludable.   La LGMD tambi\u00e9n me ha dado el don de apreciar las peque\u00f1as cosas de la vida. Y lo que es m\u00e1s importante, la LGMD me ha dado la capacidad de no tomarme a m\u00ed misma tan en serio. Mi hija peque\u00f1a me dice a menudo que soy \"tonta\" y me parece bien: la vida es demasiado corta e incierta como para no pararse a re\u00edr. Uno de mis lemas en la vida es: \"Si el plan 'A' no funciona, \u00a1hay veinticinco letras m\u00e1s en el alfabeto!\". J<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n<p>Esta enfermedad afecta a cada persona de forma diferente e incluso a la misma persona le afecta de forma diferente dependiendo del d\u00eda y del entorno que le rodea. A veces, una tarea aparentemente sencilla y mundana para una persona sana puede parecer abrumadora para una persona con D.M. debido al proceso y\/o a las barreras f\u00edsicas que conlleva.  Todo lo que puedo decir al mundo, a los amigos, a la familia y a los cuidadores es que es importante querer y apoyar a las personas con D.M., no s\u00f3lo f\u00edsicamente, sino tambi\u00e9n emocional y psicol\u00f3gicamente, aunque no se entienda del todo lo que sienten y por qu\u00e9.<\/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>Si me despertara hoy y no tuviera ning\u00fan s\u00edntoma, sin duda me ir\u00eda directamente a la playa.<\/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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD SPOTLIGHT INTERVIEW Name:\u00a0 Anna \u00a0\u00a0Age: \u00a0\u00a036 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[38,36],"class_list":["post-1378","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-canada","tag-lgmd2i"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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