{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"INDIVIDUO CON LGMD: John"},"content":{"rendered":"

\"<\/p>\n

Nombre<\/strong>: John\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Edad<\/strong>28 a\u00f1os<\/p>\n

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

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

 <\/p>\n

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

A los 10 a\u00f1os me diagnosticaron DM de Becker. Alrededor de los 11 o 12 a\u00f1os, me diagnosticaron miopat\u00eda mitocondrial. En 2016 me diagnosticaron LGMD y LGMD2J\/R10 se confirm\u00f3 gen\u00e9ticamente en 2021.<\/p>\n

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

Tuve dificultades para caminar correctamente alrededor de los 5 a\u00f1os. Me dol\u00edan mucho las pantorrillas al hacer ejercicio y me costaba seguir el ritmo de otros ni\u00f1os.<\/p>\n

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

Mi hermano tambi\u00e9n tiene LGMD2J.<\/p>\n

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

Los mayores retos son perder la capacidad de hacer las cosas que me gustan y tener que buscarme nuevas aficiones una y otra vez debido a la debilidad progresiva. Es dif\u00edcil de sobrellevar. Ahora tambi\u00e9n me estoy dando cuenta de que las actividades cotidianas son dif\u00edciles o imposibles de completar de forma independiente sin la ayuda de mi incre\u00edble esposa, Christina. Por desgracia, debido a la naturaleza de mi discapacidad y al dispositivo de movilidad que utilizo, a menudo se me discrimina y se me niega el acceso a algunos lugares p\u00fablicos.<\/p>\n

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

Casarme con mi bella esposa, Christina, y licenciarme en Qu\u00edmica.<\/p>\n

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

Esta enfermedad me ha convertido en la persona que soy hoy, me ha supuesto un reto, me ha permitido conocer a otras personas de la comunidad de discapacitados y me ha empujado a ser la defensora que soy ahora. La limitaci\u00f3n de mis capacidades f\u00edsicas me ha convertido en una persona m\u00e1s creativa a la hora de resolver problemas y me ha ense\u00f1ado mucho sobre la paciencia. A veces tengo la sensaci\u00f3n de que la enfermedad me est\u00e1 machacando, pero para m\u00ed es importante recordar que no estoy sola en la lucha por un tratamiento real para enfermedades como la m\u00eda.<\/p>\n

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

Me gustar\u00eda que hubiera una mayor concienciaci\u00f3n sobre el impacto que una enfermedad como la LGMD puede tener en la vida, la salud mental y las expectativas vitales de una persona. Quiero que los dem\u00e1s se den cuenta de la gravedad de la progresi\u00f3n de la enfermedad, pero tambi\u00e9n de la valiosa lucha a la que todos debemos unirnos en alg\u00fan momento contra las enfermedades cr\u00f3nicas y raras.<\/p>\n

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

Sin lugar a dudas, \u00a1me subir\u00eda a una moto de cross y me pasar\u00eda d\u00edas montando! Sol\u00eda montar mucho cuando era m\u00e1s joven, pero ya no tengo fuerzas. Sigo pensando en ello todos los d\u00edas.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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