{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Jo\u00e3o"},"content":{"rendered":"

\"<\/p>\n

Nome<\/strong>: Jo\u00e3o\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Idade<\/strong>: 28 anos<\/p>\n

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

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

 <\/p>\n

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

Aos 10 anos, foi-me diagnosticada a doen\u00e7a de Becker. Por volta dos 11 ou 12 anos, fui ent\u00e3o diagnosticado com miopatia mitocondrial. Em 2016, foi-me diagnosticada a LGMD e a LGMD2J\/R10 foi finalmente confirmada geneticamente em 2021.<\/p>\n

Quais foram os seus primeiros SINTOMAS?<\/strong><\/p>\n

Por volta dos 5 anos de idade, tive dificuldade em andar corretamente. Sentia dores tremendas na barriga das pernas quando fazia exerc\u00edcio e tinha dificuldade em acompanhar as outras crian\u00e7as.<\/p>\n

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

O meu irm\u00e3o tamb\u00e9m sofre de LGMD2J.<\/p>\n

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

Os maiores desafios s\u00e3o perder a capacidade de fazer as coisas de que gosto e ter de encontrar repetidamente novos passatempos devido \u00e0 fraqueza progressiva. \u00c9 dif\u00edcil lidar com isso. Agora tamb\u00e9m estou a descobrir que as actividades di\u00e1rias s\u00e3o dif\u00edceis ou imposs\u00edveis de realizar de forma independente sem a ajuda da minha fant\u00e1stica mulher, Christina. Infelizmente, devido \u00e0 natureza da minha defici\u00eancia e ao dispositivo de mobilidade que utilizo, sou frequentemente discriminado e \u00e9-me negado o acesso a alguns locais p\u00fablicos.<\/p>\n

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

Casar com a minha linda mulher, Christina, e licenciar-me em Qu\u00edmica.<\/p>\n

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

Ter a doen\u00e7a moldou realmente quem eu sou hoje, desafiando-me, permitindo-me conhecer outras pessoas da comunidade de deficientes e levando-me a ser a defensora que sou hoje. O facto de estar limitada nas minhas capacidades f\u00edsicas tornou-me uma pessoa mais criativa na resolu\u00e7\u00e3o de problemas e ensinou-me muito sobre paci\u00eancia. Por vezes, parece que a doen\u00e7a me est\u00e1 a derrotar, mas \u00e9 importante para mim lembrar-me que n\u00e3o estou sozinha na luta por um verdadeiro tratamento para doen\u00e7as como a minha.<\/p>\n

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

Gostaria que houvesse uma maior sensibiliza\u00e7\u00e3o para o impacto que uma doen\u00e7a como a LGMD pode ter na vida, na sa\u00fade mental e nas expectativas de vida de uma pessoa. Quero que os outros se apercebam da gravidade da progress\u00e3o da doen\u00e7a, mas tamb\u00e9m da luta que vale a pena travar contra as doen\u00e7as cr\u00f3nicas e raras.<\/p>\n

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

Sem d\u00favida, eu pegava numa bicicleta de terra e andava durante dias! Costumava andar muito quando era mais novo, mas j\u00e1 n\u00e3o tenho for\u00e7a suficiente. Continuo a pensar nisso todos os dias.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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