{"id":5588,"date":"2022-01-07T02:44:43","date_gmt":"2022-01-07T02:44:43","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5588"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-sophia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2022\/01\/07\/individual-with-lgmd-sophia\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Sophia"},"content":{"rendered":"

\"<\/p>\n

LGMD \"Entrevista em destaque\" <\/strong><\/h2>\n

Nome<\/strong>: Sophia<\/p>\n

Idade<\/strong>: \u00a08<\/p>\n

Pa\u00eds<\/strong>: EUA<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD 2A\/R1 relacionado com a calpa\u00edna 3<\/p>\n

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

O diagn\u00f3stico oficial foi-me feito aos 6 anos, atrav\u00e9s de an\u00e1lises gen\u00e9ticas ao sangue.<\/p>\n

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

Tive uma pneumonia quando tinha 4,5 anos e a minha m\u00e3e trouxe-me para fazer an\u00e1lises ao sangue porque estive doente durante muito tempo. Os meus n\u00edveis de enzimas hep\u00e1ticas eram muito elevados e os m\u00e9dicos come\u00e7aram a procurar uma raz\u00e3o para isso. Tamb\u00e9m comecei a andar sobre os dedos dos p\u00e9s. Entrei e sa\u00ed de muitos hospitais e fui mal diagnosticada durante 1,5 anos. Foi assustador, mas eu era muito corajosa.<\/p>\n

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

Que saibamos, n\u00e3o.<\/p>\n

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

Os meus maiores desafios s\u00e3o ter de andar muito, as minhas pernas ficam muito cansadas e ver os mi\u00fados a fazer coisas enquanto brincam que eu sei que me v\u00e3o cansar as pernas e os bra\u00e7os. Tamb\u00e9m costumava ser capaz de fazer barras de macaco. Isso faz-me sentir triste. A minha fam\u00edlia arranja sempre maneira de me ajudar a fazer as coisas, mas continua a ser dif\u00edcil ver outras crian\u00e7as da minha idade a correr e a brincar sem se cansarem depressa como eu.<\/p>\n

Quais s\u00e3o as suas maiores realiza\u00e7\u00f5es?<\/strong><\/p>\n

Falei com os meus 3rd<\/sup> Na minha nova escola, falei com a turma sobre a minha LGMD2A, apesar de estar muito assustada. Ajudo a sensibilizar as pessoas para que outras crian\u00e7as n\u00e3o tenham de passar por tanto para serem diagnosticadas e para ajudar a encontrar uma cura. Consigo fazer acampamentos de circo e curvas para tr\u00e1s, apesar de ter distrofia muscular. N\u00e3o deixo que isso me impe\u00e7a de experimentar coisas novas, mesmo quando sei que vai ser dif\u00edcil. Tamb\u00e9m aprendi a andar de bicicleta el\u00e9ctrica para poder brincar com os meus amigos.<\/p>\n

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

Tornou-me muito corajosa. Enfrento os meus medos de cair \u00e0 frente das pessoas e de ir ao hospital e isso torna-me forte. N\u00e3o vejo as defici\u00eancias ou o olhar fixo das pessoas, vejo-as a elas. Tamb\u00e9m estou a aprender a aceitar-me tal como sou.<\/p>\n

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

\u00c9 poss\u00edvel ter uma vida muito feliz e os pais precisam de saber que crian\u00e7as como eu s\u00e3o felizes mesmo com os desafios da distrofia muscular. Apesar de a ter, arranjo maneira de me deslocar e uso a minha cadeira de rodas quando preciso. Nem sempre \u00e9 f\u00e1cil e pode ser assustador quando o nosso corpo n\u00e3o funciona como queremos. Quero que o mundo saiba que h\u00e1 crian\u00e7as como eu \u00e0 espera de uma cura.<\/p>\n

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

Gostaria de correr muito r\u00e1pido e longe, andar de bicicleta normal, fazer barras de macaco e muita gin\u00e1stica.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5587,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-5588","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sophia - 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\/01\/07\/individual-with-lgmd-sophia\/\" 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