{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"INDIVIDUO CON LGMD: Jade"},"content":{"rendered":"

\"<\/p>\n

LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/h3>\n

Nombre<\/strong>: Jade<\/p>\n

Edad<\/strong>20 a\u00f1os<\/p>\n

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

Subtipo LGMD<\/strong>: LGMD 2A\/R1 relacionado con la calpa\u00edna 3<\/p>\n

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

Me diagnosticaron oficialmente en marzo de 2021, as\u00ed que todo esto es a\u00fan nuevo para m\u00ed.<\/p>\n

\u00bfCu\u00e1les fueron sus primeros S\u00cdNTOMAS?<\/strong><\/p>\n

La primera vez que not\u00e9 los s\u00edntomas, pens\u00e9 que s\u00f3lo estaba deshidratada. Me sent\u00eda d\u00e9bil, con las piernas como gelatina y dolor en las caderas. Ahora que soy consciente de mi diagn\u00f3stico, puedo echar la vista atr\u00e1s y ver s\u00edntomas desde una edad tan temprana como los 12 a\u00f1os. Jugaba al softball y no pod\u00eda hacer que mis piernas corrieran r\u00e1pido por mucho que lo intentara. Tambi\u00e9n he tenido siempre pantorrillas anormalmente grandes, pero ahora s\u00e9 que eso puede ocurrir debido a la falta de fuerza muscular en los cu\u00e1driceps.<\/p>\n

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

No, soy la \u00fanica persona de mi familia con LGMD2A\/R1.<\/p>\n

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

Las escaleras me impiden muchas cosas. A\u00fan puedo subir escaleras, pero me cuesta mucho esfuerzo y energ\u00eda. No merece la pena. Tambi\u00e9n tengo que aprender a adaptar mi vida diaria, como tener una silla para sentarme y descansar cuando cocino, sentarme en el suelo para coger a los ni\u00f1os en vez de cogerlos en brazos y limitar el n\u00famero de cosas que hago al d\u00eda. El mayor obst\u00e1culo que he experimentado es el obst\u00e1culo mental que supone mi silla el\u00e9ctrica. S\u00e9 que necesito utilizarla, pero existe una barrera mental que a\u00fan no ha aceptado mi diagn\u00f3stico.<\/p>\n

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

Mis relaciones y seguir teniendo una visi\u00f3n positiva de la vida. Termin\u00e9 la escuela secundaria, pero pas\u00e9 por el problema del diagn\u00f3stico despu\u00e9s, as\u00ed que no he llegado a la universidad todav\u00eda, pero eso es un objetivo m\u00edo.<\/p>\n

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

Me ha dado la capacidad de ser m\u00e1s consciente de m\u00ed misma y de autoeducarme. Ahora estoy m\u00e1s en contacto con mi cuerpo, puedo saber si estoy en rabdomi\u00f3lisis, si me est\u00e1 bajando el trabajo o si simplemente necesito tomarme un descanso. Debido a la falta de investigaci\u00f3n sobre la LGMD, hay mucho de autoeducaci\u00f3n y defensa. Vivo en una comunidad semi-rural, as\u00ed que ning\u00fan m\u00e9dico ten\u00eda ni idea de qu\u00e9 hacer por m\u00ed o qu\u00e9 ten\u00eda. Ahora puedo llamar a mi m\u00e9dico de cabecera, contarle lo que me pasa y que me trate como es debido.<\/p>\n

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

La LGMD no tiene el mismo aspecto en todas las personas. No todo el mundo ser\u00e1 ambulatorio y no todo el mundo estar\u00e1 en una silla de ruedas. Igual que no todo el mundo tiene un diagn\u00f3stico precoz, y algunas personas nunca lo tienen) aunque ahora sea m\u00e1s f\u00e1cil). No todo el mundo se tomar\u00e1 bien el diagn\u00f3stico y seguir\u00e1 adelante con confianza, y no todo el mundo sufrir\u00e1 una espiral debido al diagn\u00f3stico. Nunca des por sentado que sabes por lo que est\u00e1 pasando alguien f\u00edsica y mentalmente.<\/p>\n

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

Lo primero que me gustar\u00eda hacer es ir de vacaciones\/viaje por carretera lleno de aventuras. Ahora no me resulta pr\u00e1ctico, pero siempre he querido ir al Gran Ca\u00f1\u00f3n, a Yosemite, al punto m\u00e1s alto de los Montes Apalaches y a los volcanes de Hawai.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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