{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"INDIVIDUO CON LGMD: Siri"},"content":{"rendered":"

11\/06\/2015<\/strong><\/p>\n

NOMBRE<\/strong>: Siri\u00a0 EDAD<\/strong>28 a\u00f1os<\/p>\n

PA\u00cdS<\/strong>: Noruega<\/p>\n

Subtipo LGMD<\/strong>: LGMD2A \/ Calpainopat\u00eda\"LGMD2A<\/a><\/p>\n

 <\/p>\n

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

Me lo diagnosticaron cuando ten\u00eda 26 a\u00f1os.<\/p>\n

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

Empec\u00e9 a experimentar una fatiga inexplicable a los 16 a\u00f1os. Cuando ten\u00eda 19, me di cuenta de que ten\u00eda problemas para poner mi<\/p>\n

brazo derecho sobre mi cabeza. A principios de mis 20 a\u00f1os, los cordones del tal\u00f3n empezaron a molestarme por estar superapretados. Algunos a\u00f1os<\/p>\n

M\u00e1s tarde empec\u00e9 a tener problemas con las escaleras y los asientos bajos y ya no pod\u00eda correr ni saltar.<\/p>\n

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

No, soy el \u00fanico miembro de la familia con LGMD2A.<\/p>\n

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

Las tareas cotidianas que la gente da por sentadas me frustran mucho algunos d\u00edas. Como salir de un<\/p>\n

silla, darme la vuelta en la cama o atarme los zapatos: todas estas peque\u00f1as cosas me cansan y no me gusta perder el tiempo.<\/p>\n

energ\u00eda en ello. Pero la verdadera lucha es todo el trabajo extra que supone tener una discapacidad. La gente no ve todo el<\/p>\n

horas que paso haciendo papeleo para conseguir las cosas que necesito y averiguar mis derechos, fisioterapia, citas con el m\u00e9dico, etc., o todo el tiempo que \"pierdo\" descansando porque un d\u00eda me he pasado. Tambi\u00e9n es un reto depender de otras personas.<\/p>\n

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

Estudi\u00e9 6 a\u00f1os en la universidad y me licenci\u00e9 como profesora. Tambi\u00e9n he visitado muchas<\/p>\n

pa\u00edses e hice senderismo en varias monta\u00f1as a pesar de mis dificultades.<\/p>\n

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

Me ha ense\u00f1ado a no dar nada por sentado. Me ha hecho m\u00e1s humilde y agradecida por todas las peque\u00f1as cosas de la vida. Me ha ense\u00f1ado a ir m\u00e1s despacio, a ser m\u00e1s paciente y a atreverme a pedir ayuda en las peque\u00f1as tareas. Y a disfrutar de cada d\u00eda. Tambi\u00e9n me ha hecho ser m\u00e1s creativa, porque tengo que encontrar nuevas formas de hacer las cosas. \u00a1Y he hecho TANTOS amigos nuevos! Eso me encanta.<\/p>\n

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

Que exista es un buen comienzo. Y que afecta a las personas de diferentes maneras, pero para la mayor\u00eda de nosotros es<\/p>\n

Es muy frustrante y deprimente perder habilidades con el tiempo. Siempre estamos lidiando con esto, ya que es una<\/p>\n

enfermedad progresiva. Es un dolor continuo. Y que tambi\u00e9n afecta a nuestros seres queridos. S\u00e9 amable, siempre.<\/p>\n

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

\u00a1Correr\u00eda! Y saltar\u00eda por todas partes. \u00a1Y bailar\u00eda toda la noche! Y ayudar\u00eda a mis amigos a moverse o algo as\u00ed, jaja \ud83d\ude09 .<\/p>\n

 <\/p>\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD […]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Siri<\/title>\n<meta name=\"description\" content=\"Siri, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/11\/06\/siri\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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