{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"Entrevista em destaque\"<\/strong><\/p>\n\n\n\n

Nome<\/strong>: Dylan                                  Idade<\/strong>: 28 anos<\/p>\n\n\n\n

Pa\u00eds<\/strong>: Estados Unidos da Am\u00e9rica<\/p>\n\n\n\n

LGMD Sub-tipo<\/strong>: LGMD 2J \/ R10 Relacionado com a titina<\/p>\n\n\n\n

Com que idade foi diagnosticado<\/strong>: <\/p>\n\n\n\n

Foi-me diagnosticado aos 23 anos de idade.<\/p>\n\n\n\n

Quais foram os seus primeiros sintomas<\/strong>: <\/p>\n\n\n\n

Comecei a notar que as coisas \"normais\" se tornavam cada vez mais dif\u00edceis para mim - subir lances de escadas, levantar-me depois de me sentar no ch\u00e3o, saltar e agachar. Sentia uma fadiga muscular constante e ca\u00eda de forma aleat\u00f3ria. Quando perdi a capacidade de correr e as quedas se tornaram mais frequentes, percebemos que algo se passava.<\/p>\n\n\n\n

Tem outros familiares que sofrem de LGMD: <\/strong><\/p>\n\n\n\n

N\u00e3o. Eu sou o \u00fanico!<\/p>\n\n\n\n

Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n\n\n\n

\u00c9 uma doen\u00e7a cruel porque n\u00e3o s\u00f3 nos tira naturalmente a for\u00e7a e a mobilidade, como tenta tirar-nos a esperan\u00e7a e o controlo sobre a nossa pr\u00f3pria vida. Enquanto o nosso corpo se deteriora diariamente sem qualquer tratamento ou cura \u00e0 vista, \u00e9 f\u00e1cil sentirmo-nos derrotados e negligenciados. Penso que esse \u00e9 um dos seus maiores desafios - manter a cabe\u00e7a \u00e0 tona da \u00e1gua. \u00c9 por isso que \u00e9 t\u00e3o importante mantermo-nos positivos e vivermos a vida da melhor forma poss\u00edvel, independentemente do que isso possa parecer!<\/p>\n\n\n\n

Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n\n\n\n

Tenho tido muita sorte e a felicidade de poder viajar pelo pa\u00eds (44 estados) a tocar m\u00fasica com alguns dos melhores tipos do mundo. N\u00e3o tenho a certeza de quanto tempo mais poderei fazer isso, mas tem sido um sonho tornado realidade. Tamb\u00e9m me orgulho de ter acabado o curso na Texas Christian University (Go Frogs) e fui campe\u00e3o estadual de xadrez quando era mi\u00fado. Tamb\u00e9m acho que sou um \u00f3timo pai de c\u00e3o!<\/p>\n\n\n\n

Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n\n\n\n

Ensina-me coisas novas todos os dias. Ganhei a perspetiva de uma vida inteira em t\u00e3o pouco tempo. Tornei-me um melhor solucionador de problemas. Sou muito mais paciente comigo mesmo e com os outros. Aprecio cada momento e cada passo que me resta. Agora sorrio mais, olho para as nuvens e trato toda a gente com gentileza. Tento ser o her\u00f3i de algu\u00e9m. Para al\u00e9m de sofrer de LGMD, sou o homem mais sortudo do mundo, com a melhor fam\u00edlia e os melhores amigos que algu\u00e9m poderia desejar.<\/p>\n\n\n\n

O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n\n\n\n

Que somos pessoas com objectivos, aspira\u00e7\u00f5es, paix\u00f5es e sentimentos - tal como toda a gente. Muitos de n\u00f3s tamb\u00e9m j\u00e1 fomos bastante \"normais\". Se toda a gente soubesse os obst\u00e1culos e obst\u00e1culos que t\u00eam de ser ultrapassados por algu\u00e9m com LGMD apenas para passar pela sua rotina di\u00e1ria normal, as pessoas come\u00e7ariam a compreender como a nossa comunidade \u00e9 resistente e resiliente. Perceberiam que esta \u00e9 uma comunidade e uma doen\u00e7a pela qual vale a pena lutar. Por isso, seja um defensor enquanto os investigadores e cientistas descobrem estas doen\u00e7as misteriosas!<\/p>\n\n\n\n

Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n\n\n\n

Iria correr no quintal com o meu c\u00e3o, dan\u00e7ar com uma senhora bonita e simp\u00e1tica, jogar basebol com os meus amigos e, provavelmente, escalar uma montanha s\u00f3 porque sim!<\/p>\n\n\n\n

Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para ser apresentado numa pr\u00f3xima entrevista, visite o nosso site em: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Dylan                                  Age:  28 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3465,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[],"class_list":["post-3464","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Dylan - 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\/2020\/08\/24\/dylan\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Dylan - 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