{"id":3769,"date":"2020-12-03T09:38:38","date_gmt":"2020-12-03T15:38:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3769"},"modified":"2024-02-09T14:24:25","modified_gmt":"2024-02-09T14:24:25","slug":"individual-with-lgmd-saira","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD - Saira"},"content":{"rendered":"

\"\"<\/a><\/strong><\/p>\n

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

Idade<\/strong>: 29<\/p>\n

Pa\u00eds<\/strong>: Indiano a viver nos EAU<\/p>\n

LGMD Sub-tipo<\/strong> (se conhecido): LGMD 2B\/R2 relacionada com a disferlina<\/p>\n

\u00a0<\/strong><\/p>\n

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

Foi-me diagnosticada aos 16 anos de idade. Recebi a confirma\u00e7\u00e3o gen\u00e9tica em fevereiro de 2020.<\/p>\n

Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n

Cair de repente e levantar-se depois de se sentar no ch\u00e3o foram os primeiros sintomas.<\/p>\n

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

N\u00e3o, nenhum dos membros da minha fam\u00edlia tem LGMD. Eu sou o \u00fanico a quem foi diagnosticada a LGMD.<\/p>\n

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

Barreiras ambientais e acessibilidade a cadeiras de rodas. Oportunidades de emprego sem o estigma associado \u00e0s capacidades que possuo. Falta de neurologistas interessados na LGMD e numa resposta r\u00e1pida ao diagn\u00f3stico. Progress\u00e3o da LGMD e como lidar com os desafios cont\u00ednuos associados \u00e0 doen\u00e7a. Pouca ou nenhuma orienta\u00e7\u00e3o sobre os tipos de equipamento que podem ser \u00fateis para as actividades do dia a dia.<\/p>\n

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

Come\u00e7ar um novo emprego numa empresa nos Emirados \u00c1rabes Unidos e eles deixarem-me trabalhar a partir de casa como uma acomoda\u00e7\u00e3o acess\u00edvel para me incluir. Agora trabalho todos os dias na Inclusive para criar um impacto global e tornar este mundo mais acess\u00edvel online e offline.<\/p>\n

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

Deu-me uma nova perspetiva da vida e ensinou-me a valorizar o meu tempo e as minhas capacidades actuais.<\/p>\n

Posso n\u00e3o ser capaz de fazer tudo fisicamente como qualquer outra pessoa, mas isso n\u00e3o significa que n\u00e3o tenho nada a contribuir para causar impacto no mundo que todos partilhamos igualmente.<\/p>\n

A LGMD ensinou-me a estar grata \u00e0 minha fam\u00edlia, mais do que antes, com o seu apoio constante.<\/p>\n

Fez-me viver e amar cada momento ainda mais.<\/p>\n

Uma vez que se trata de uma doen\u00e7a degenerativa, que progride, as coisas que posso fazer hoje podem n\u00e3o ser as que poderei fazer no pr\u00f3ximo ano. Por isso, tento desfrutar de todos os movimentos f\u00edsicos que posso fazer hoje, neste preciso momento. Desde pentear o cabelo a fazer uma ch\u00e1vena de ch\u00e1 para mim, dou-lhe valor.<\/p>\n

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

Quero que o mundo saiba que esta \u00e9 uma doen\u00e7a rara. Pode acontecer a qualquer pessoa. Pode ser a si, que est\u00e1 a ler isto, ou pode ser a algu\u00e9m que n\u00e3o conhece e que pode estar a viver com isto. Mas h\u00e1 pessoas que vivem com esta doen\u00e7a que desgasta os m\u00fasculos e que espera pela sua cura. Posso dar-vos o exemplo da pandemia e da forma como os cientistas de todo o mundo est\u00e3o a correr para encontrar uma vacina. No entanto, no caso da LGMD, a investiga\u00e7\u00e3o est\u00e1 a decorrer h\u00e1 d\u00e9cadas sem resultados, sendo a falta de fundos ou a falta de apoio governamental algumas das raz\u00f5es para tal. Desde os sintomas ao diagn\u00f3stico at\u00e9 ao dia em que aceitei a LGMD e comecei a viver com ela, tem sido uma viagem solit\u00e1ria. O apoio do meu marido, da minha fam\u00edlia e dos meus amigos \u00e9 algo que me d\u00e1 coragem todos os dias. A falta de especialistas, a falta de conhecimentos adequados sobre a doen\u00e7a \u00e9 algo com que me deparo em todas as consultas m\u00e9dicas. Precisamos de empatia num ambiente sem barreiras. Ontem andava a p\u00e9 e hoje preciso de uma cadeira de rodas. A justifica\u00e7\u00e3o da minha condi\u00e7\u00e3o ser\u00e1 mais f\u00e1cil se as pessoas conhecerem a LGMD.<\/p>\n

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

A pergunta a que estou a responder \u00e9 hipot\u00e9tica. Como gostaria de lhe ter respondido como se fosse pr\u00e1tica e aguardo o dia com positivismo e esperan\u00e7a.<\/p>\n

O dia talvez esteja longe, ou pode ser em breve. Gostaria de me ajoelhar e rezar como quero, como fazemos na minha cren\u00e7a religiosa. Gostava de dan\u00e7ar e patinar, o que j\u00e1 n\u00e3o posso fazer porque sofro de LGMD. Gostava de conduzir um carro. Quero voltar a ser independente.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3769","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD - Saira - 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\/2020\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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