{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Jade"},"content":{"rendered":"

\"<\/p>\n

LGMD \"ENTREVISTA EM DESTAQUE\"<\/strong><\/h3>\n

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

Idade<\/strong>: 20 anos de idade<\/p>\n

Pa\u00eds<\/strong>: Estados Unidos<\/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 feito em mar\u00e7o de 2021, pelo que tudo isto ainda \u00e9 novo para mim.<\/p>\n

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

A primeira vez que notei sintomas, pensei que estava apenas desidratada. Sentia-me fraca, as minhas pernas pareciam gelatina e tinha dores nas ancas. Agora que estou ciente do meu diagn\u00f3stico, posso olhar para tr\u00e1s e ver os sintomas desde os 12 anos de idade. Jogava softball e n\u00e3o conseguia fazer com que as minhas pernas corressem depressa, por muito que tentasse. Tamb\u00e9m sempre tive as barriga das pernas anormalmente grandes, mas agora sei que isso pode acontecer devido \u00e0 falta de for\u00e7a muscular nas ancas.<\/p>\n

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

N\u00e3o, sou a \u00fanica pessoa da minha fam\u00edlia com LGMD2A\/R1.<\/p>\n

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

As escadas impedem-me de fazer muita coisa. Ainda consigo subir escadas, mas \u00e9 preciso muito esfor\u00e7o e energia. N\u00e3o vale a pena. Tamb\u00e9m tenho de aprender a adaptar a minha vida quotidiana, por exemplo, ter uma cadeira para me sentar e descansar quando cozinho, sentar-me no ch\u00e3o para pegar nas crian\u00e7as em vez de as pegar ao colo e limitar o n\u00famero de coisas que fa\u00e7o num dia. O maior obst\u00e1culo que tenho sentido \u00e9 a dificuldade mental relativamente \u00e0 minha cadeira el\u00e9ctrica. Sei que preciso de a usar, mas h\u00e1 uma barreira mental que ainda n\u00e3o aceitou o meu diagn\u00f3stico.<\/p>\n

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

As minhas rela\u00e7\u00f5es e o facto de continuar a ter uma vis\u00e3o positiva da vida. Completei o ensino secund\u00e1rio, mas depois tive o problema do diagn\u00f3stico, por isso ainda n\u00e3o cheguei \u00e0 universidade, mas \u00e9 um objetivo meu.<\/p>\n

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

Deu-me a capacidade de ser mais consciente de mim pr\u00f3prio e de me auto-educar. Agora, estou mais em contacto com o meu corpo, consigo perceber se estou em rabdomi\u00f3lise, se estou a perder trabalho ou se preciso apenas de descansar. Devido \u00e0 falta de investiga\u00e7\u00e3o sobre a LGMD, \u00e9 preciso muita autoeduca\u00e7\u00e3o e defesa. Vivo numa comunidade semi-rural, pelo que nenhum m\u00e9dico fazia ideia do que fazer por mim ou do que eu tinha. Atualmente, posso telefonar ao meu m\u00e9dico de fam\u00edlia, dizer-lhe o que se passa e ele trata-me em conformidade.<\/p>\n

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

A LGMD n\u00e3o tem o mesmo aspeto em toda a gente. Nem toda a gente ser\u00e1 ambulat\u00f3ria e nem toda a gente estar\u00e1 numa cadeira de rodas. Tal como nem toda a gente tem um diagn\u00f3stico precoce, e algumas pessoas nunca chegam a ter um), embora agora seja mais f\u00e1cil). Nem toda a gente aceitar\u00e1 bem o diagn\u00f3stico e seguir\u00e1 em frente com confian\u00e7a, e nem toda a gente entrar\u00e1 numa espiral devido ao diagn\u00f3stico. Nunca parta do princ\u00edpio de que sabe o que algu\u00e9m est\u00e1 a passar f\u00edsica e mentalmente.<\/p>\n

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

A primeira coisa que eu gostaria de fazer era ir de f\u00e9rias aventureiras\/viagem de carro. N\u00e3o \u00e9 pr\u00e1tico para mim agora, mas quero sempre ir ao Grand Canyon, a Yosemite, ao ponto mais alto dos Montes Apalaches e aos vulc\u00f5es do Havai.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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\/2021\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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