{"id":2862,"date":"2019-10-01T20:27:15","date_gmt":"2019-10-02T01:27:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2862"},"modified":"2019-10-01T20:27:15","modified_gmt":"2019-10-02T01:27:15","slug":"william","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"Indiv\u00edduo com LGMD: William"},"content":{"rendered":"<figure class=\"wp-block-image\"><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\/2019\/10\/LGMD1D-William-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2860\"\/><\/figure>\n\n\n\n<p><strong>LGMD \"Entrevista em destaque\"<\/strong><\/p>\n\n\n\n<p><strong>Nome<\/strong>:  William&nbsp;\n<strong>Idade<\/strong>:\n62 anos de idade<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n\n\n\n<p><strong>LGMD Sub-tipo<\/strong>:   LGMD D1 DNAJB6-related (Anteriormente LGMD tipo 1D)<\/p>\n\n\n\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n\n\n\n<p>O diagn\u00f3stico cl\u00ednico foi-me feito aos 40 anos e, 5 anos mais tarde, aos 45 anos, recebi a confirma\u00e7\u00e3o gen\u00e9tica do meu diagn\u00f3stico de LGMD 1D.<\/p>\n\n\n\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n\n\n\n<p>Em crian\u00e7a, eu era lento.  Por volta dos 45 anos, tive dificuldade em correr.<\/p>\n\n\n\n<p><strong>Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n\n\n\n<p>Sim, o meu irm\u00e3o, que tem 67 anos, tem LGMD1D e a minha\nfilha.<\/p>\n\n\n\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios\nem viver com a LGMD<\/strong>:<\/p>\n\n\n\n<p>O maior desafio para mim tem sido adaptar-me \u00e0\nfraqueza e ter de abrandar gradualmente.<\/p>\n\n\n\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n\n\n\n<p>A minha maior realiza\u00e7\u00e3o foi a cria\u00e7\u00e3o da Funda\u00e7\u00e3o LGMD-1D\nDNAJB6 Foundation, que \u00e9 uma funda\u00e7\u00e3o p\u00fablica sem fins lucrativos cuja miss\u00e3o \u00e9\nmanter um local central para os indiv\u00edduos diagnosticados com Distrofia Muscular das Cinturas\nDistrofia Muscular de Cinturas dos Membros tipo 1D (LGMD1D) para se reunirem, consolidarem not\u00edcias relevantes e lan\u00e7arem\nesfor\u00e7os de angaria\u00e7\u00e3o de fundos para fazer avan\u00e7ar a investiga\u00e7\u00e3o.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>Criei tamb\u00e9m um Registo de Doentes para todos os doentes diagnosticados com uma forma autoss\u00f3mica dominante de LGMD.  (LGMD tipo 1)<\/p>\n\n\n\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a\npessoa que voc\u00ea \u00e9 hoje:<\/strong><\/p>\n\n\n\n<p>A LGMD teve um impacto na minha vida e em quem sou hoje.  Abrandar o ritmo fez-me apreciar o que est\u00e1\n\u00e0 minha volta, a fam\u00edlia, os amigos e os contactos.<\/p>\n\n\n\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n\n\n\n<p>Temos de continuar a espalhar a palavra e a ligar-nos de forma a ajudar a encontrar uma cura.  Por exemplo, um registo de doentes com LGMD autoss\u00f3mica dominante (LGMD tipo 1) ser\u00e1 vital para a investiga\u00e7\u00e3o e para encontrar uma cura.<\/p>\n\n\n\n<p><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a\nseria a primeira coisa que gostaria de fazer<\/strong>:<\/p>\n\n\n\n<p>Se amanh\u00e3 estivesse curada, iria dan\u00e7ar e jogar futebol com as minhas netas!!!<\/p>\n\n\n\n<p> <\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; William&nbsp; Age: 62 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2860,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[103],"class_list":["post-2862","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d","tag-lgmd-d1-dnajb6-related-united-states-lgmd1d"],"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: William - 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\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: William - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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