{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"INDIVIDUO CON LGMD: Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

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

N<\/strong>ame<\/strong>: Soralla<\/p>\n

Edad<\/strong>: 28<\/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 lo diagnosticaron a los 23 a\u00f1os.<\/p>\n

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

Mis s\u00edntomas al principio eran una ligera debilidad en la parte inferior del cuerpo, me costaba subir las escaleras tan r\u00e1pido como sol\u00eda, o levantarme del suelo, especialmente cuando nos sent\u00e1bamos en el patio en clase de educaci\u00f3n f\u00edsica. Tenga en cuenta que estos s\u00edntomas comenzaron en el 11th<\/sup> grado de secundaria. Sin embargo, no me diagnosticaron hasta los 23 a\u00f1os.<\/p>\n

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

Ning\u00fan otro miembro de la familia ha sido diagnosticado de LGMD. Tengo dos hermanos menores y no se han hecho la prueba, pero son m\u00e1s de la edad de 23 a\u00f1os y ambos est\u00e1n haciendo bien en el momento.<\/p>\n

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

Personalmente, para m\u00ed, el mayor reto es aceptar la persona en la que me estoy convirtiendo. Lo digo porque a veces me doy cuenta de que muchos de los cambios que estoy experimentando no los he elegido yo y est\u00e1n fuera de mi control. Uno de ellos es perder poco a poco mi independencia para valerme por m\u00ed misma. Despu\u00e9s de vivir una vida muy independiente y sentir que el mundo estaba ah\u00ed para tomarlo, sentir que pierdo esa visi\u00f3n de futuro, ha sido y probablemente ser\u00e1 mi mayor reto.<\/p>\n

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

Mi mayor logro es haber encontrado mi voz. No soy tan defensora como me gustar\u00eda, pero he hablado de m\u00ed misma y de mi historia un par de veces. Hice un canal de YouTube y cont\u00e9 mi historia desde mi propia perspectiva, y tambi\u00e9n estoy muy orgullosa de m\u00ed misma por haber vuelto a la escuela, para terminar mi educaci\u00f3n que estaba estancada debido al diagn\u00f3stico de esta discapacidad.<\/p>\n

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

Me ha abierto el coraz\u00f3n, la mente y el alma como ninguna otra cosa podr\u00eda hacerlo. Quiero creer que siempre he sido muy emp\u00e1tica y tengo un gran coraz\u00f3n, pero desgraciadamente muy d\u00e9bil. De ni\u00f1a sufr\u00ed mucho acoso y pas\u00e9 por traumas. Ahora que estoy pasando por esto, siento que todo eso del pasado prepar\u00f3 mi coraz\u00f3n, para esta batalla. Lo digo alto y orgulloso porque ahora soy m\u00e1s fuerte emocionalmente de lo que nunca imagin\u00e9 ser. Si hoy hablara de m\u00ed a mi yo m\u00e1s joven, no me creer\u00eda.<\/p>\n

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

Quiero que el mundo sepa que importamos. La LGMD es una discapacidad f\u00edsica, pero afecta a la salud emocional, mental e incluso espiritual. As\u00ed que, por favor, ayuda a otros a contar sus verdades, sus historias y ay\u00fadanos a difundir al mundo nuestro mensaje de esperanza, de que alg\u00fan d\u00eda podremos encontrar una cura.<\/p>\n

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

Si pudiera curarme ma\u00f1ana, habr\u00eda muchas cosas, aventuras, salidas y eventos a los que asistir\u00eda. Pero una cosa que seguro que seguir\u00eda haciendo es abogar y trabajar duro para asegurarme de que todos los que puedan curarse tengan la oportunidad que se merecen. Porque despu\u00e9s de vivir con esto, no puedo levantarme y vivir mi vida y nunca mirar atr\u00e1s como si nada hubiera pasado.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - 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\" 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