{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"INDIVIDUO CON LGMD: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"Primer plano\"<\/strong><\/p>\n\n\n\n

Nombre<\/strong>: Dylan                                  Edad<\/strong>: 28 a\u00f1os<\/p>\n\n\n\n

Pa\u00eds<\/strong>: Estados Unidos de Am\u00e9rica<\/p>\n\n\n\n

Subtipo LGMD<\/strong>: LGMD 2J \/ R10 Relacionado con la titina<\/p>\n\n\n\n

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

Me lo diagnosticaron a los 23 a\u00f1os.<\/p>\n\n\n\n

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

Empec\u00e9 a notar que cada vez me costaba m\u00e1s hacer cosas \"normales\": subir escaleras, levantarme despu\u00e9s de estar sentada en el suelo, saltar y ponerme en cuclillas. Ten\u00eda fatiga muscular constante y me ca\u00eda al azar. Cuando perd\u00ed la capacidad de correr y las ca\u00eddas se hicieron m\u00e1s frecuentes, supimos que algo pasaba.<\/p>\n\n\n\n

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

No. \u00a1Soy el \u00fanico!<\/p>\n\n\n\n

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

Es una enfermedad cruel porque no s\u00f3lo nos quita de forma natural la fuerza y la movilidad, sino que intenta arrebatarnos la esperanza y el control sobre nuestra propia vida. Mientras nuestros cuerpos se deterioran a diario sin tratamiento ni cura a la vista, es f\u00e1cil sentirse derrotado y abandonado. Creo que \u00e9se es uno de sus mayores retos: mantener la cabeza fuera del agua. Por eso es tan importante mantener una actitud positiva y vivir la vida de la mejor manera posible, \u00a1sea como sea!<\/p>\n\n\n\n

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

He tenido la incre\u00edble suerte de viajar por todo el pa\u00eds (44 estados) tocando con algunos de los mejores m\u00fasicos del mundo. No estoy seguro de cu\u00e1nto tiempo m\u00e1s podr\u00e9 hacerlo, pero ha sido un sue\u00f1o hecho realidad. Tambi\u00e9n soy un orgulloso graduado de la Texas Christian University (Go Frogs) y fui campe\u00f3n estatal de ajedrez cuando era ni\u00f1o. Tambi\u00e9n creo que soy un buen padre de perros.<\/p>\n\n\n\n

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

Me ense\u00f1a cosas nuevas cada d\u00eda. He adquirido la perspectiva de toda una vida en tan poco tiempo. He aprendido a resolver mejor los problemas. Soy mucho m\u00e1s paciente conmigo mismo y con los dem\u00e1s. Aprecio cada momento y cada paso que me queda. Ahora sonr\u00edo m\u00e1s, miro a las nubes y trato a todo el mundo con amabilidad. Intento ser el h\u00e9roe de alguien. Adem\u00e1s de padecer LGMD, soy el hombre vivo m\u00e1s afortunado, con la mejor familia y los mejores amigos que nadie podr\u00eda pedir.<\/p>\n\n\n\n

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

Que somos personas con objetivos, aspiraciones, pasiones y sentimientos, como todo el mundo. Muchos de nosotros tambi\u00e9n fuimos \"normales\". Si todo el mundo supiera los obst\u00e1culos que tiene que superar una persona con LGMD para llevar su rutina diaria normal, la gente empezar\u00eda a entender lo dura y resistente que es nuestra comunidad. Se dar\u00edan cuenta de que esta es una comunidad y una enfermedad por la que merece la pena luchar. As\u00ed que, \u00a1s\u00e9 un defensor mientras los investigadores y cient\u00edficos consiguen descifrar estas misteriosas enfermedades!<\/p>\n\n\n\n

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

Correr\u00eda por el jard\u00edn con mi perro, bailar\u00eda con una chica guapa y simp\u00e1tica, jugar\u00eda al b\u00e9isbol con mis amigos y probablemente escalar\u00eda una monta\u00f1a porque s\u00ed.<\/p>\n\n\n\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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