{"id":411,"date":"2015-01-30T21:57:44","date_gmt":"2015-01-31T03:57:44","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=136"},"modified":"2015-01-30T21:57:44","modified_gmt":"2015-01-31T03:57:44","slug":"136","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/01\/30\/136\/","title":{"rendered":"INDIVIDUO CON LGMD: Carol"},"content":{"rendered":"

01\/30\/2015\"c1\"<\/a><\/p>\n

NOMBRE:<\/strong> Carol<\/p>\n

EDAD<\/strong>: 53<\/p>\n

PA\u00cdS<\/strong>: Estados Unidos<\/p>\n

Subtipo LGMD<\/strong>: LGMD 2A \/ Calpainopat\u00eda<\/p>\n

A QU\u00c9 EDAD LE DIAGNOSTICARON<\/b>:<\/p>\n

Me diagnosticaron LGMD cuando ten\u00eda 9 a\u00f1os, pero no recib\u00ed la confirmaci\u00f3n gen\u00e9tica de LGMD2A hasta que tuve 51 a\u00f1os.<\/p>\n

\u00bfCU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS?<\/b>:<\/p>\n

De ni\u00f1a, ten\u00eda tendencia a andar de puntillas. A los 9 a\u00f1os, ya no pod\u00eda apoyar los talones en el suelo cuando estaba de pie debido a las contracturas. Empec\u00e9 a desarrollar un modo de andar \"de pato\" y tambi\u00e9n ten\u00eda dificultades para correr y subir escaleras.<\/p>\n

\u00bfTIENE OTROS FAMILIARES QUE HAYAN L<\/b>GMD: <\/b><\/p>\n

No, soy el \u00fanico que conocemos.<\/p>\n

\u00bfCU\u00c1LES SON PARA USTED LOS MAYORES RETOS DE VIVIR CON <\/b>LGMD<\/b>:<\/p>\n

Enfrentarse continuamente a la progresi\u00f3n de esta enfermedad es siempre un reto. Sin embargo, uno de los mayores retos es depender de los dem\u00e1s para la mayor\u00eda de las actividades de la vida diaria. Necesito que alguien me ayude a vestirme, a ir al aseo, a ba\u00f1arme, etc. Es muy dif\u00edcil perder la independencia.<\/p>\n

\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/b>:<\/p>\n

En 2000-2001 fui nombrada \"esquiadora acu\u00e1tica discapacitada del a\u00f1o\" por el Instituto de Rehabilitaci\u00f3n de Chicago (RIC). Pero, sinceramente, mi mayor logro es llevar un estilo de vida productivo y activo a pesar de las dificultades a las que me enfrento a diario debido a mi diagn\u00f3stico de LGMD. He trabajado durante m\u00e1s de 20 a\u00f1os como terapeuta ocupacional titulada, estoy felizmente casada y participo activamente en mi iglesia y mi comunidad.<\/p>\n

\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/b>:<\/b><\/p>\n

La LGMD me ha hecho m\u00e1s fuerte como persona a pesar de debilitarme f\u00edsicamente. Vivir con LGMD me ha ayudado a darme cuenta y aceptar el hecho de que todo el mundo tiene retos en su vida. Por desgracia, mi LGMD es m\u00e1s evidente o visible... pero tambi\u00e9n me ha ayudado a darme cuenta de que todos tenemos dones o cualidades especiales que compensan con creces los retos. He aprendido la importancia de centrarme en las cosas que PUEDO hacer y apreciarlas, en lugar de obsesionarme con las que no puedo hacer. Tambi\u00e9n me ha permitido encontrar las bendiciones en mi vida y apreciar incluso los regalos m\u00e1s peque\u00f1os. A trav\u00e9s de todo esto, me he convertido en defensora y modelo para muchos que luchan con una discapacidad o un reto en su vida... y en parte se debe a mi LGMD.<\/p>\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE<\/b> LGMD<\/b>:<\/p>\n

Actualmente NO existe tratamiento ni cura para la LGMD. La naturaleza implacable de esta enfermedad rara no deja de debilitarnos cada vez m\u00e1s: .... \u00a1incluso cuando crees que es imposible debilitarse m\u00e1s! Hist\u00f3ricamente, la LGMD atrae muchos menos fondos de investigaci\u00f3n que otras formas de distrofia muscular y, por lo tanto, menos investigadores trabajan para comprender la enfermedad y descubrir una cura. Esto tiene que cambiar. Necesitamos m\u00e1s financiaci\u00f3n y m\u00e1s investigaci\u00f3n para descubrir una cura y un tratamiento para todas las formas de LGMD.<\/p>\n

SI MA\u00d1ANA SE PUDIERA \"CURAR\" SU DGML, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE DESEAR\u00cdA HACER?<\/b>: Me gustar\u00eda correr hacia mi marido y rodearle con mis brazos para darle un abrazo enorme. Luego, ir a correr por una playa de arena.<\/p>","protected":false},"excerpt":{"rendered":"

01\/30\/2015 NAME: Carol AGE: 53 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":254,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-411","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Carol<\/title>\n<meta name=\"description\" content=\"Carol, who is 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\/01\/30\/136\/\" \/>\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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