{"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\/it\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"INDIVIDUO CON LGMD: Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"INTERVISTA SPOTLIGHT\"<\/p>\n

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

Et\u00e0<\/strong>: 55 anni<\/p>\n

Paese<\/strong>: India<\/p>\n

Sottotipo LGMD<\/strong>: LGMD2A\/R1 Calpaina 3 - correlato<\/p>\n

A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>?<\/p>\n

Mi \u00e8 stata diagnosticata all'et\u00e0 di 13 anni.<\/p>\n

Quali sono stati i primi SINTOMI?<\/strong><\/p>\n

I sintomi hanno iniziato a manifestarsi all'et\u00e0 di cinque anni. Camminavo con le dita dei piedi mentre salivo le scale o camminavo in salita. Avevo bisogno di un sostegno per le ginocchia quando mi alzavo da una posizione seduta. Mi tenevo in equilibrio sulle punte dei piedi mentre ero seduta in posizione accovacciata.<\/p>\n

Ha altri familiari affetti da LGMD?<\/strong><\/p>\n

S\u00ec, anche ai miei due fratelli maggiori \u00e8 stata diagnosticata la LGMD2A\/R1.<\/p>\n

Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>?<\/p>\n

Le sfide pi\u00f9 grandi riguardano le attivit\u00e0 della vita quotidiana. E non poter servire i miei genitori che invecchiano ogni giorno di pi\u00f9.<\/p>\n

Qual \u00e8 il suo pi\u00f9 grande risultato?<\/strong><\/p>\n

Il mio pi\u00f9 grande risultato \u00e8 stata la creazione di un'organizzazione per la distrofia muscolare, l'Associazione indiana per la distrofia muscolare. www.iamd.in<\/a> E ora sta fondando un centro di riabilitazione per tutte le forme di distrofia muscolare.<\/p>\n

In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi?<\/strong><\/p>\n

Quello che sono oggi \u00e8 solo grazie alla LGMD. Per 27 anni ho gestito con successo una boutique di abbigliamento femminile, creando parallelamente un'organizzazione per la distrofia muscolare.<\/p>\n

Cosa volete che il mondo sappia della LGMD?<\/strong>?<\/p>\n

Voglio che il mondo sappia tutto sulla LGMD: i sintomi, le sfide, la gestione, la riabilitazione, le ultime ricerche scientifiche e l'organizzazione che lavora per sensibilizzare e dare sollievo alle persone e alle famiglie colpite da questa malattia neuromuscolare progressiva.<\/p>\n

Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>?<\/p>\n

Se io guarisco, voglio fare lo stesso per ogni individuo diagnosticato in questo mondo.<\/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\/it\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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