{"id":416,"date":"2015-02-12T22:30:56","date_gmt":"2015-02-13T04:30:56","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=161"},"modified":"2015-02-12T22:30:56","modified_gmt":"2015-02-13T04:30:56","slug":"161","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"INDIVIDUO CON LGMD: Lydia"},"content":{"rendered":"

02\/12\/2014:\"LGMD2B<\/a><\/p>\n

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

Edad<\/strong>: 45<\/p>\n

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

SUBTIPO LGMD<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

A QU\u00c9 EDAD LE DIAGNOSTICARON:<\/strong> 41<\/p>\n

CU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS:<\/strong>
\nMis primeros s\u00edntomas fueron: rodillas que se sal\u00edan de su sitio, dolor en piernas, pies, pecho, cuello y brazos, ca\u00eddas, letargo y un extra\u00f1o andar de pato.<\/p>\n

\u00bfTIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?<\/strong>
\nNo<\/p>\n

\u00bfCU\u00c1LES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LA VGMD:<\/strong>
\nLa naturaleza progresiva de la enfermedad es aterradora. El letargo que provoca la LGMD tambi\u00e9n es debilitante. Adem\u00e1s de la enfermedad, considero que la falta de accesibilidad y las actitudes sociales hacia las personas discapacitadas son muy limitantes.<\/p>\n

\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>
\nEs dif\u00edcil. Conseguir trabajar, cuidar de ni\u00f1os peque\u00f1os, de una madre con demencia y de mi anciano padre (con la ayuda de mis hermanos), y obtener una licenciatura en Trabajo Social. Mirando atr\u00e1s, me asombra haber podido hacerlo todo.<\/p>\n

\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/strong>
\nHa aumentado mi empat\u00eda hacia los dem\u00e1s y ha sido el impulso para mi desarrollo de una conciencia de discapacidad.<\/p>\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGM?<\/strong>
\nEn primer lugar, que la conozcan. Incluso la mayor\u00eda de los profesionales m\u00e9dicos desconocen esta afecci\u00f3n.<\/p>\n

En segundo lugar, es progresiva y debilitante.<\/p>\n

En tercer lugar, me siento bastante seguro al afirmar que la mayor\u00eda de los que la padecemos preferir\u00edamos que no fuera as\u00ed, raz\u00f3n por la cual la investigaci\u00f3n y la concienciaci\u00f3n p\u00fablica son tan vitales.<\/p>\n

En cuarto lugar, y esto es un ejemplo, hace poco en uno de nuestros grupos en l\u00ednea, las personas con mi enfermedad hablaban de las cinco cosas que les gustar\u00eda hacer si se curaran. Cosas como coger en brazos a sus hijos y dar abrazos a sus seres queridos. Esta es la perniciosa realidad de la LGMD.<\/p>\n

SI SU ALGMD PUDIERA \"CURARSE\" MA\u00d1ANA, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE DESEAR\u00cdA HACER?<\/strong>
\nMe encantar\u00eda poder ir de excursi\u00f3n a una zona boscosa con mi familia.<\/p>","protected":false},"excerpt":{"rendered":"

02\/12\/2014: NAME: Lydia Age: 45 COUNTRY: United States LGMD SUB-TYPE: […]<\/p>","protected":false},"author":1,"featured_media":162,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,25,16],"class_list":["post-416","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lydia<\/title>\n<meta name=\"description\" content=\"Lydia, 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=\"http:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/\" \/>\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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