{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Donavon"},"content":{"rendered":"<p>03\/12\/2015:<\/p>\n<p><strong>Nome<\/strong>: Donavon\u00a0 <strong>Idade<\/strong>: 52<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/03\/LGMD2D-Donavon.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-313 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\/2015\/03\/LGMD2D-Donavon-300x169.png\" alt=\"LGMD2D - Donavon\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n<p><strong>LGMD Sub-tipo<\/strong>: LGMD2D<\/p>\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n<p>Foi-me diagnosticado aos 16 anos<\/p>\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n<p>Nunca fui capaz de correr muito depressa e tinha problemas em subir escadas. Viv\u00edamos numa quinta durante parte do tempo e, quando se tratava de fazer tarefas dom\u00e9sticas, n\u00e3o era capaz de levantar um saco cheio de ra\u00e7\u00e3o.<\/p>\n<p><strong>Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n<p>Sim, tenho quatro irm\u00e3s e duas sobrinhas com LGMD.<\/p>\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n<p>Toda a ajuda de que tenho precisado ao longo dos anos continua a aumentar todos os anos. Estou muito grato \u00e0 minha grande mulher e aos grandes amigos que me ajudaram ao longo dos anos. A minha irm\u00e3 Monica faleceu em 2012 devido a complica\u00e7\u00f5es da LGMD, por isso n\u00e3o me esque\u00e7o de que estou a ficar mais fraco.<\/p>\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n<p>Ser a primeira pessoa a fazer uma terapia gen\u00e9tica para a distrofia muscular. Telefonei mensalmente a um m\u00e9dico depois de o meu defeito gen\u00e9tico ter sido identificado e, quando estavam a iniciar o primeiro ensaio, ofereci-me como volunt\u00e1rio. A terapia gen\u00e9tica abriu-me muitas oportunidades, pois testemunhei no Senado dos Estados Unidos. Ajudei a fazer press\u00e3o sobre a primeira MD Care Act em Washington DC. Tamb\u00e9m fiz parte de um comit\u00e9 de supervis\u00e3o do National Institutes of Health durante seis anos.<\/p>\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><strong>:<\/strong><\/p>\n<p>Por causa da minha LGMD, penso que tive de lutar mais pelos empregos... algumas pessoas ouvem dizer que tenho Distrofia Muscular ou v\u00eaem-me numa cadeira de rodas e pensam que n\u00e3o sou capaz de fazer nada. Como resultado, desenvolvi uma abordagem muito determinada e otimista em muitos aspectos da minha vida. Vejo as outras pessoas com defici\u00eancia de forma diferente porque conhe\u00e7o algumas das dificuldades com que elas lidam diariamente. Estou grato por ser crist\u00e3o, porque um dia, se n\u00e3o houver uma cura enquanto eu estiver vivo, n\u00e3o haver\u00e1 doen\u00e7as no C\u00e9u.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n<p>Penso que estamos muito pr\u00f3ximos de um tratamento ou de uma cura. Participei no primeiro ensaio de terapia g\u00e9nica em 1999 e estou muito entusiasmado com o in\u00edcio deste pr\u00f3ximo ensaio de terapia g\u00e9nica, em que se utilizar\u00e1 o sistema sangu\u00edneo para administrar o novo vetor.<\/p>\n<p><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n<p>Conduzir um carro ou uma pickup em vez de conduzir uma carrinha. Um dia, gostaria de ter outro Pontiac GTO.<\/p>","protected":false},"excerpt":{"rendered":"<p>03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/03\/12\/donavon\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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