{"id":1026,"date":"2015-09-30T07:31:34","date_gmt":"2015-09-30T12:31:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1026"},"modified":"2015-09-30T07:31:34","modified_gmt":"2015-09-30T12:31:34","slug":"brad","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Brad"},"content":{"rendered":"<p>09\/30\/2015:<\/p>\n<p><strong>Nome<\/strong>:  Brad\u00a0 <strong>Idade<\/strong>: 51 anos de idade<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/09\/LGMD2B-Brad.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1027 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\/09\/LGMD2B-Brad-300x169.png\" alt=\"LGMD2B - Brad\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n<p><strong>LGMD Sub-tipo<\/strong>: LGMD2B\/Miopatia de Miyoshi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n<p>Comecei a ter sintomas aos 18 anos. Mas s\u00f3 cerca de 10 anos mais tarde \u00e9 que um neurologista me disse que eu tinha Miyoshi.  Depois tive de esperar mais 10 anos para que o gene fosse descoberto antes de haver uma forma de confirmar que era isso que eu tinha.<\/p>\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n<p>N\u00e3o conseguia p\u00f4r-me em p\u00e9, inicialmente s\u00f3 de um lado.<\/p>\n<p><strong>Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n<p>N\u00e3o<\/p>\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n<p>Que h\u00e1 muito mais planeamento envolvido na programa\u00e7\u00e3o de qualquer atividade.  Muitas das actividades quotidianas (viajar, fazer compras, ir a um restaurante) envolvem muito mais coisas a que \u00e9 preciso prestar aten\u00e7\u00e3o.<\/p>\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n<p>Em 2000, criei um s\u00edtio Web sobre a disferlina (o gene do meu subtipo de LGMD).  N\u00e3o sabia nada sobre web design, mas queria que outros doentes tivessem uma fonte de informa\u00e7\u00e3o sobre a doen\u00e7a e a investiga\u00e7\u00e3o que estava a ser feita.  Foi assim que fui contactada pela fam\u00edlia Jain, depois de um dos seus filhos ter sido diagnosticado. Mais tarde, criaram a Jain Foundation, que apoia a investiga\u00e7\u00e3o sobre o meu subtipo.  Em 2007, a Funda\u00e7\u00e3o Jain organizou a primeira confer\u00eancia de investiga\u00e7\u00e3o sobre a disferlina.  Estive sempre a beliscar-me a pensar que isto n\u00e3o podia ser verdade - havia mesmo uma confer\u00eancia dedicada a esta doen\u00e7a!<\/p>\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n<p>Penso que isso me tornou mais atencioso e consciente dos outros.  Sempre fui muito independente quando era jovem, mas o facto de precisar de ajuda em algumas coisas, e tamb\u00e9m de querer trabalhar com outros para encontrar curas para as LGMDs, ensinou-me a import\u00e2ncia de pedir ajuda quando se precisa, de oferecer ajuda quando se pode, e de trabalhar em conjunto.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n<p>Em primeiro lugar, o facto de existir.  Penso que muitas pessoas t\u00eam a ideia de que a DM s\u00f3 afecta os rapazes, ou pelo menos as crian\u00e7as.  Eu tinha essa ideia antes de come\u00e7ar a ter sintomas.  Quero que saibam que existem muitos tipos diferentes de DM e que os sintomas podem come\u00e7ar em qualquer idade.<\/p>\n<p>Em segundo lugar, penso que a sociedade tende a ver a defici\u00eancia como uma coisa a preto e branco.  Ou seja, ou uma pessoa \u00e9 deficiente e pode precisar de ajuda, ou est\u00e1 completamente bem e n\u00e3o precisa.   Mas no caso de uma doen\u00e7a como a LGMD, em que os sintomas muitas vezes progridem lentamente, quando \u00e9 que uma pessoa se torna exatamente deficiente?  Penso que a forma como as coisas est\u00e3o organizadas desencoraja muitas vezes as pessoas que s\u00e3o capazes e que querem trabalhar de o fazer, e de fazer tudo o que podem com as suas vidas<\/p>\n<p>Quero que os outros doentes saibam que n\u00e3o est\u00e3o sozinhos.  Quando estava na faculdade, estava extremamente preocupada com a minha DM (que ainda n\u00e3o tinha sido diagnosticada), mas n\u00e3o sentia que pudesse partilhar isso com ningu\u00e9m.  Muitos anos mais tarde, conheci outro doente que tamb\u00e9m tem LGMD e que estava a tirar um curso na mesma universidade na mesma altura que eu!  Apesar de a LGMD ser uma doen\u00e7a rara, h\u00e1 outras pessoas por a\u00ed e \u00e9 bom estabelecer contacto com elas.<\/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>Ou fazer patinagem no gelo ou esquiar.  Antes de come\u00e7ar a ter sintomas, era uma patinadora art\u00edstica de competi\u00e7\u00e3o e seria muito bom poder voltar a faz\u00ea-lo. Tamb\u00e9m fiz muito esqui quando era mais nova e adorava.  Tamb\u00e9m fazia muito esqui quando era mais nova e adorava.<\/p>\n<p>&nbsp;<\/p>\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\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>09\/30\/2015: Name:\u00a0 Brad\u00a0 Age: 51 yrs. old Country: United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1027,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,16],"class_list":["post-1026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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