{"id":7663,"date":"2023-04-22T16:20:29","date_gmt":"2023-04-22T16:20:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=7663"},"modified":"2024-02-09T14:23:48","modified_gmt":"2024-02-09T14:23:48","slug":"peter","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2c\/2023\/04\/22\/peter\/","title":{"rendered":"INDIVIDUO CON LGMD: Peter"},"content":{"rendered":"

\"Lgmd2c<\/p>\n

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

Edad<\/strong>: \u00a010<\/p>\n

Pa\u00eds<\/strong>: EE.UU.<\/p>\n

Subtipo LGMD<\/strong>: LGMD 2C\/R5 gamma-sarcoglicanopat\u00eda<\/p>\n

* Completado por la madre de Peter<\/em><\/p>\n

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

Me diagnosticaron a la edad de 9 a\u00f1os. Mam\u00e1 y pap\u00e1 empezaron a notar un empeoramiento de la debilidad muscular que lleg\u00f3 a ser muy preocupante, as\u00ed que llevamos a Peter al m\u00e9dico de cabecera para que le hiciera an\u00e1lisis y comprobara si se trataba de un trastorno neuromuscular. Encontramos una CK elevada y comenzamos nuestro viaje de diagn\u00f3stico: las pruebas gen\u00e9ticas confirmaron LGMD 2C.<\/p>\n

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

Los primeros s\u00edntomas a los 6-7 a\u00f1os inclu\u00edan hipertrofia de la pantorrilla, ligera marcha de puntillas e incapacidad para seguir el ritmo de sus compa\u00f1eros en deportes apropiados para su edad (es decir, correr por las bases, golpear pelotas de b\u00e9isbol, etc.).<\/p>\n

Los s\u00edntomas a los 8-9 a\u00f1os inclu\u00edan dificultad para levantarse del suelo utilizando las piernas para levantarse, dificultad con las escaleras y ca\u00eddas frecuentes.<\/p>\n

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

Hermana menor de 7 a\u00f1os, diagnosticada posteriormente de LGMD 2C. Sin antecedentes parentales ni familiares previos de ninguna distrofia.<\/p>\n

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

Peter ha empezado a mostrar cierta fatiga durante la jornada escolar, lo que requiere descansos frecuentes, tiempo extra para llegar a clase y algunas adaptaciones en las clases. La dificultad para subir escaleras y caminar distancias largas supone un reto casi diario.<\/p>\n

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

A pesar de quedarse fuera de los equipos deportivos y de no poder seguir a veces el ritmo de sus compa\u00f1eros, Peter ha entablado maravillosas amistades durante toda la escuela primaria. Cuando empez\u00f3 a mostrar s\u00edntomas, sus amigos se unieron a \u00e9l para apoyarle y ayudarle. Su amplio grupo de amigos es el resultado directo de su personalidad amable y afable; de hecho, la mayor\u00eda de sus amigos afirman que Peter es su \"mejor amigo\".<\/p>\n

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

Peter sigue aprendiendo sobre la LGMD. Hemos hablado de su enfermedad neuromuscular con un lenguaje apropiado para su edad, pero teniendo cuidado con la capacidad de un ni\u00f1o de 10 a\u00f1os de \"googlear\" cualquier cosa. Hablamos de la importancia de la fisioterapia, los estiramientos y el descanso necesario cuando est\u00e1 cansado. Peter ha estado luchando por mantener el ritmo durante los \u00faltimos a\u00f1os, sin quejarse ni abandonar, mientras trabajaba mucho m\u00e1s de lo que sab\u00edamos. A Peter le interesan la ingenier\u00eda y la arquitectura de aviones, portaaviones, buques de guerra, etc. Sue\u00f1a con dise\u00f1ar y construir buques de guerra, como portaaviones y destructores.<\/p>\n

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

A nosotros, como familia, nos gustar\u00eda difundir informaci\u00f3n sobre la LGMD, en concreto sobre los sarc\u00f3glidos. Estas enfermedades hereditarias, raras y gen\u00e9ticas pueden aparecer sin previo aviso ni antecedentes familiares. La investigaci\u00f3n sobre la LGMD es limitada, al igual que las posibles opciones de tratamiento. Un error com\u00fan sobre la LGMD es que puede aparecer m\u00e1s tarde en la vida y tener una \"progresi\u00f3n lenta\"; sin embargo, los sarcomoglucanos afectan com\u00fanmente a los ni\u00f1os y pueden tener una progresi\u00f3n r\u00e1pida de la enfermedad.<\/p>\n

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

A Peter le gustar\u00eda jugar al b\u00e9isbol con sus amigos, corretear con su hermano y aprender a pescar un at\u00fan gigante con pap\u00e1.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":7664,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[],"class_list":["post-7663","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Peter - 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\/lgmd2c\/2023\/04\/22\/peter\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Peter - 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