{"id":3558,"date":"2020-09-04T10:02:29","date_gmt":"2020-09-04T15:02:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3558"},"modified":"2024-02-09T14:24:33","modified_gmt":"2024-02-09T14:24:33","slug":"tatyana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/09\/04\/tatyana\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Tatyana"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EM DESTAQUE\"&nbsp;<\/strong><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/09\/LGMD2A-Tatyana-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3559\"\/><\/figure><\/div>\n\n\n\n<p><strong>Nome<\/strong>:  Tatyana&nbsp;&nbsp;      <strong>Idade<\/strong>: 33 anos de idade<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>: R\u00fassia<\/p>\n\n\n\n<p><strong>LGMD Sub-tipo<\/strong>:  LGMD 2A \/ R1 Relacionado com a calpa\u00edna3<\/p>\n\n\n\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n\n\n\n<p>Foi-me diagnosticado um subtipo desconhecido de LGMD aos 14-15 anos. Quando tinha 27 ou 28 anos, o meu diagn\u00f3stico foi confirmado geneticamente.<\/p>\n\n\n\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n\n\n\n<p>Os meus primeiros sintomas foram dificuldade em correr, subir escadas e tamb\u00e9m nunca consegui fazer flex\u00f5es.<\/p>\n\n\n\n<p><strong>Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n\n\n\n<p>N\u00e3o, sou a \u00fanica pessoa com LGMD na minha fam\u00edlia.<\/p>\n\n\n\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n\n\n\n<p>A aceita\u00e7\u00e3o era muito mais dif\u00edcil do que a pr\u00f3pria defici\u00eancia f\u00edsica. \u00c9s raro, \u00e9s diferente. N\u00e3o pertences a nenhum grupo social comum. N\u00e3o temos ningu\u00e9m que possa partilhar a sua pr\u00f3pria experi\u00eancia e ajudar-nos. Gra\u00e7as \u00e0 Internet, conheci pessoas com diferentes tipos de distrofia muscular e que sabem o que se sente. Agora compreendo a import\u00e2ncia de fazer parte de uma comunidade onde se pode encontrar apoio.<\/p>\n\n\n\n<p>E o segundo desafio \u00e9 a falta de acessibilidade. Tenho sempre de planear todos os meus passos, todos os meus percursos.<\/p>\n\n\n\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n\n\n\n<p>N\u00e3o sei J. A minha vida \u00e9 bastante normal: Trabalho, aprendo coisas novas. Adoro a minha fam\u00edlia e os meus amigos. Penso que a minha maior realiza\u00e7\u00e3o pessoal \u00e9 ter ultrapassado o medo de ficar dependente devido \u00e0 perda progressiva de for\u00e7as. J\u00e1 n\u00e3o me assusta. Agora s\u00f3 procuro formas de tornar a minha vida com a LGMD mais f\u00e1cil.<\/p>\n\n\n\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n\n\n\n<p>Mudou-me profundamente. Tenho mais empatia, sou mais tolerante. Dou mais valor a coisas que normalmente s\u00e3o tidas como garantidas.<\/p>\n\n\n\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n\n\n\n<p>Quero que o mundo saiba que a LGMD \u00e9 uma doen\u00e7a progressiva e que \u00e9 preciso tempo para nos habituarmos a ela. E quero que o mundo saiba que a vida com LGMD pode ser cheia de felicidade como qualquer outra vida.<\/p>\n\n\n\n<p><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n\n\n\n<p>Eu dan\u00e7ava valsa! E tamb\u00e9m corria! As duas coisas - o mais depressa poss\u00edvel para sentir o vento!<\/p>\n\n\n\n<p>Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para ser apresentado numa pr\u00f3xima entrevista, visite o nosso site em: <a href=\"https:\/\/www.lgmd-info.org\/pt\/spotlight-interviews\/\">http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d&nbsp; Name:&nbsp; Tatyana&nbsp;&nbsp; Age: 33 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-3558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Tatyana - 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