{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Andrea"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/p>\n\n\n\n

Nome<\/strong>: Andrea  Idade<\/strong>: 24 anos<\/p>\n\n\n\n

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

LGMD Sub-tipo<\/strong>: LGMD2A - uma forma de Calpainopatia <\/p>\n\n\n\n

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

Foi-me diagnosticado aos 11 anos de idade.<\/p>\n\n\n\n

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

Aos 8 anos, n\u00e3o conseguia manter-me de p\u00e9 com os calcanhares no ch\u00e3o e\ncomecei a andar com os dedos dos p\u00e9s pouco tempo depois. A fraqueza dos ombros e das ancas\ne ancas.<\/p>\n\n\n\n

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

N\u00e3o, eu sou o \u00fanico membro da fam\u00edlia a quem foi diagnosticada a LGMD.<\/p>\n\n\n\n

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

N\u00e3o poder usar a Uber!<\/p>\n\n\n\n

A natureza progressiva da doen\u00e7a \u00e9 um desafio. Tenho\ntive de me adaptar \u00e0 perda de certas capacidades ao longo do tempo, e \u00e9 dif\u00edcil\nsaber que essas perdas v\u00e3o continuar. Por exemplo, em crian\u00e7a conseguia andar,\nutilizei um Segway para me deslocar durante a adolesc\u00eancia e agora utilizo uma\ncadeira de rodas. Para mim, as adapta\u00e7\u00f5es mais dif\u00edceis t\u00eam sido o facto de j\u00e1 n\u00e3o poder\npoder visitar as casas dos meus amigos, porque quase sempre t\u00eam degraus, e\ntocar instrumentos musicais de que gostava.<\/p>\n\n\n\n

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

Sinto-me feliz por ter encontrado uma \u00e1rea de estudo na faculdade que me apaixona e que posso seguir com a LGMD. Estou orgulhosa de mim pr\u00f3pria por me ter mudado para um novo estado para fazer uma p\u00f3s-gradua\u00e7\u00e3o em bioestat\u00edstica e viver de forma independente. Mas de curso<\/g> v\u00e1rias pessoas ajudaram-me ao longo do caminho (adoro a vossa m\u00e3e e pai <\/g>:<\/g>).<\/p>\n\n\n\n

Como \u00e9 que a LGMD o influenciou a tornar-se a\npessoa que voc\u00ea \u00e9 hoje:<\/strong><\/p>\n\n\n\n

Por vezes, a vida coloca-nos desafios que n\u00e3o podemos mudar,\nmas o processo de lidar com esses desafios pode muitas vezes ser muito gratificante.\nViver com a LGMD tornou-me uma pessoa mais forte em muitos aspectos, apesar da\nf\u00edsica. Tamb\u00e9m me ensinou o valor da vulnerabilidade e de abra\u00e7ar a\ntristeza para sentir plenamente a alegria. Na verdade, talvez o filme \"Inside Out\" me tenha ensinado\nme ensinado isso...<\/p>\n\n\n\n

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

Toda a gente devia ver a TED Talk de Stella Young intitulada \"I am\nn\u00e3o sou a vossa inspira\u00e7\u00e3o, muito obrigada\". Ela partilha uma grande mensagem sobre\na explora\u00e7\u00e3o de pessoas com defici\u00eancia. Acredito que a grande maioria\nde n\u00f3s nesta terra est\u00e1 a fazer o melhor que pode, apesar dos v\u00e1rios traumas que\nsofridos. Para aqueles de n\u00f3s com defici\u00eancias f\u00edsicas, esse trauma \u00e9 apenas um\num pouco mais evidente a olho nu.<\/p>\n\n\n\n

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

Esta pergunta \u00e9 a mais dif\u00edcil para mim. Nunca tive\ntive inveja de pessoas que correm, fazem caminhadas ou v\u00e3o ao gin\u00e1sio. Eu\nprovavelmente s\u00f3 iria para a escola, mas usaria as escadas em vez do elevador. Mas\nessa \u00e9 uma resposta aborrecida. Talvez eu fosse mais dram\u00e1tico; podia vender a minha cadeira de rodas\ne usar o dinheiro para levar a minha fam\u00edlia \u00e0 Europa. Poder usar a casa de banho\nnum avi\u00e3o pode ser emocionante. Mas eu perderia o tratamento especial que vem\nque vem com o uso de uma cadeira de rodas. Ser diferente tem as suas vantagens.<\/p>\n\n\n\n

*** Por favor, GOSTEI, COMENTEI e PARTILHEI esta publica\u00e7\u00e3o para ajudar a aumentar a\na sensibiliza\u00e7\u00e3o para a LGMD!<\/p>\n\n\n\n

*** Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, por favor visite o nosso website em https:\/\/www.lgmd-info.org\/spotlight-interviews <\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Andrea  Age: 24 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","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: Andrea - 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=\"http:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - 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