{"id":2098,"date":"2018-07-13T09:14:39","date_gmt":"2018-07-13T14:14:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2098"},"modified":"2018-07-13T09:14:39","modified_gmt":"2018-07-13T14:14:39","slug":"individual-with-lgmd-majed","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2018\/07\/13\/individual-with-lgmd-majed\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Majed"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/p>\n<p><strong>Nome<\/strong>: Majed\u00a0 \u00a0<strong>Idade<\/strong>:\u00a0 20\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2099 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>:  S\u00edria \/ Alemanha<\/p>\n<p><strong>LGMD Sub-tipo<\/strong>:  LGMD2C<\/p>\n<p>&nbsp;<\/p>\n<p><strong>COM QUE IDADE FOI DIAGNOSTICADO<\/strong>:<\/p>\n<p>Foi-me diagnosticado aos 8 anos.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS<\/strong>:<\/p>\n<p>Os sintomas come\u00e7aram a aparecer quando eu tinha 7 anos de idade.  Quando era crian\u00e7a, andava sobre os dedos dos p\u00e9s.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0TEM OUTROS FAMILIARES QUE SOFREM DE LGMD<\/strong>:<\/p>\n<p>Sim, o meu irm\u00e3o e dois dos meus tios (irm\u00e3os da minha m\u00e3e) tamb\u00e9m foram diagnosticados com LGMD2C. (O meu irm\u00e3o ainda vive na S\u00edria e chama-se Younis. Ele j\u00e1 foi apresentado numa entrevista LGMD Spotlight).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUAIS S\u00c3O, NA SUA OPINI\u00c3O, OS MAIORES DESAFIOS DE VIVER COM A LGMD?<\/strong>:<\/p>\n<p>O maior desafio para mim \u00e9 andar e estar de p\u00e9 durante longos per\u00edodos. Consigo andar 500 metros com uma bengala.   Tamb\u00e9m uso uma cadeira de rodas e tenho algumas dificuldades na casa de banho.  Por vezes, fa\u00e7o algumas tarefas di\u00e1rias sozinho.<\/p>\n<p>Atualmente, vivo na Alemanha com o meu tio e h\u00e1 dois anos que n\u00e3o vejo os meus pais e irm\u00e3os.  Acho que \u00e9 dif\u00edcil viver sozinho... longe da minha fam\u00edlia, dos meus irm\u00e3os e do meu pa\u00eds.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O<\/strong>:<\/p>\n<p>A verdade \u00e9 que n\u00e3o sei qual \u00e9 a maior conquista para mim.   Mas orgulho-me de ainda conseguir andar e fazer algum exerc\u00edcio.<\/p>\n<p>Apesar das condi\u00e7\u00f5es de guerra e desloca\u00e7\u00e3o na S\u00edria, consegui passar o ensino secund\u00e1rio com sucesso e h\u00e1 10 anos aprendi a nadar.<\/p>\n<p>Mas o maior desafio que enfrentei foi a viagem de ref\u00fagio da S\u00edria para a Alemanha atrav\u00e9s de 9 pa\u00edses.  Em 10 dias, n\u00e3o consigo descrever as dificuldades que encontrei na estrada. Numa floresta na S\u00e9rvia, percorri 5 quil\u00f3metros e, nessa altura, n\u00e3o tinha cadeira de rodas, exceto no caso do nosso barco se ter afundado em frente \u00e0s ilhas gregas.<\/p>\n<p>Agora estou a aprender a l\u00edngua alem\u00e3 e, depois de terminar, vou concluir os meus estudos universit\u00e1rios.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE<\/strong>:<\/p>\n<p>A LGMD ensinou-me a ser um ser humano paciente e bondoso.  Uma pessoa pode fazer o que quiser, independentemente das suas circunst\u00e2ncias.  \u00c9 duro, mas tamb\u00e9m me ensinou a mostrar vontade e determina\u00e7\u00e3o.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD<\/strong>:<\/p>\n<p>Quero que o mundo saiba mais sobre esta doen\u00e7a e todos os diferentes tipos de LGMD. Al\u00e9m disso, quero que as pessoas saibam que \u00e9 vital que haja mais investiga\u00e7\u00e3o centrada na LGMD para ajudar a encontrar uma cura e um tratamento para estas doen\u00e7as. Espero que os cientistas encontrem uma cura para esta doen\u00e7a. Tamb\u00e9m quero que as pessoas tomem medidas para a prevenir.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER<\/strong>:<\/p>\n<p>A primeira coisa que vou fazer \u00e9 ir para a piscina e saltar de um s\u00edtio alto.  Para al\u00e9m disso, correr depressa e jogar futebol com o meu irm\u00e3o Younis.<\/p>\n<p>&nbsp;<\/p>\n<p>* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, por favor visite o nosso website em <a href=\"https:\/\/www.lgmd-info.org\/pt\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p>* Por favor, GOSTEI, COMENTEI e PARTILHEI esta publica\u00e7\u00e3o para ajudar a aumentar a sensibiliza\u00e7\u00e3o para a LGMD!<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name: Majed\u00a0 \u00a0Age:\u00a0 20\u00a0\u00a0 Country: \u00a0Syria \/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2099,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[98],"class_list":["post-2098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria-germany"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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