{"id":5519,"date":"2021-09-20T00:30:58","date_gmt":"2021-09-20T00:30:58","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5519"},"modified":"2024-02-09T14:24:00","modified_gmt":"2024-02-09T14:24:00","slug":"individual-with-lgmd-sanjana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"INDIVIDUO CON LGMD: Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/p>\n

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

Edad<\/strong>: 55 a\u00f1os<\/p>\n

Pa\u00eds<\/strong>: India<\/p>\n

Subtipo LGMD<\/strong>: LGMD2A\/R1 Calpa\u00edna 3 - relacionado<\/p>\n

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

Me lo diagnosticaron a los 13 a\u00f1os.<\/p>\n

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

Los s\u00edntomas empezaron a manifestarse alrededor de los cinco a\u00f1os. Me pon\u00eda de puntillas al subir escaleras o caminar cuesta arriba. Necesitaba apoyar las rodillas al levantarme de una posici\u00f3n sentada. Me manten\u00eda en equilibrio sobre los dedos de los pies cuando estaba sentado en cuclillas.<\/p>\n

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

S\u00ed, a mis dos hermanos mayores tambi\u00e9n les han diagnosticado LGMD2A\/R1.<\/p>\n

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

Los mayores retos son las actividades de la vida diaria. Y no poder atender a mis padres, que cada d\u00eda son m\u00e1s mayores.<\/p>\n

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

Mi mayor logro ha sido crear una organizaci\u00f3n para la distrofia muscular: la Asociaci\u00f3n India de Distrofia Muscular. www.iamd.in<\/a> Y ahora estableciendo un centro de rehabilitaci\u00f3n para todas las formas de distrofia muscular.<\/p>\n

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

Lo que soy hoy es gracias a la LGMD. Durante 27 a\u00f1os dirig\u00ed con \u00e9xito una boutique de ropa de dise\u00f1o para se\u00f1oras y, paralelamente, cre\u00e9 la organizaci\u00f3n para la distrofia muscular.<\/p>\n

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

Quiero que el mundo lo sepa todo sobre la LGMD: s\u00edntomas, retos, tratamiento, rehabilitaci\u00f3n, \u00faltimas investigaciones cient\u00edficas y la organizaci\u00f3n que trabaja para concienciar y aliviar a las personas y familias afectadas por esta enfermedad neuromuscular progresiva.<\/p>\n

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

Si yo me curo, quiero conseguir lo mismo para todos y cada uno de los individuos diagnosticados en este mundo.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5520,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sanjana - 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\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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