{"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\/pt\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"ENTREVISTA EM DESTAQUE\"<\/p>\n

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

Idade<\/strong>: 55 anos de idade<\/p>\n

Pa\u00eds<\/strong>: \u00cdndia<\/p>\n

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

Com que idade foi diagnosticado<\/strong>?<\/p>\n

Foi-me diagnosticado aos 13 anos de idade.<\/p>\n

Quais foram os seus primeiros SINTOMAS?<\/strong><\/p>\n

Os sintomas come\u00e7aram a manifestar-se por volta dos cinco anos de idade. Andava em bicos de p\u00e9s quando subia escadas ou caminhava numa subida. Precisava de apoio para os joelhos quando me levantava de uma posi\u00e7\u00e3o sentada. Equilibrava-me nos dedos dos p\u00e9s quando estava sentado numa posi\u00e7\u00e3o de c\u00f3coras.<\/p>\n

Tem outros familiares que sofrem de LGMD?<\/strong><\/p>\n

Sim, os meus dois irm\u00e3os mais velhos tamb\u00e9m foram diagnosticados com LGMD2A\/R1.<\/p>\n

Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>?<\/p>\n

Os maiores desafios s\u00e3o as actividades da vida di\u00e1ria. E n\u00e3o poder servir os meus pais que est\u00e3o a envelhecer de dia para dia.<\/p>\n

Qual \u00e9 a sua maior realiza\u00e7\u00e3o?<\/strong><\/p>\n

A minha maior realiza\u00e7\u00e3o foi a cria\u00e7\u00e3o de uma organiza\u00e7\u00e3o para a distrofia muscular - a Indian Association of Muscular Dystrophy. www.iamd.in<\/a> E agora est\u00e1 a criar um centro de reabilita\u00e7\u00e3o para todas as formas de distrofia muscular.<\/p>\n

Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n

O que sou hoje deve-se apenas \u00e0 LGMD. Dirigi uma bem sucedida boutique de moda feminina durante 27 anos e, paralelamente, criei a organiza\u00e7\u00e3o para a distrofia muscular.<\/p>\n

O que quer que o mundo saiba sobre a LGMD<\/strong>?<\/p>\n

Quero que o mundo saiba tudo sobre a LGMD - sintomas, desafios, gest\u00e3o, reabilita\u00e7\u00e3o, investiga\u00e7\u00e3o cient\u00edfica mais recente e a organiza\u00e7\u00e3o que trabalha para aumentar a sensibiliza\u00e7\u00e3o e proporcionar algum al\u00edvio aos indiv\u00edduos e fam\u00edlias afectados por esta doen\u00e7a neuromuscular progressiva.<\/p>\n

Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>?<\/p>\n

Se eu ficar curado, quero levar o mesmo a todos os indiv\u00edduos diagnosticados neste 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\/pt\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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