{"id":662,"date":"2015-05-15T09:30:18","date_gmt":"2015-05-15T14:30:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=662"},"modified":"2015-05-15T09:30:18","modified_gmt":"2015-05-15T14:30:18","slug":"marjolein","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/05\/15\/marjolein\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Marjolein"},"content":{"rendered":"

05\/15\/2015<\/p>\n

Nome:<\/strong>\u00a0 Marjolein\u00a0\u00a0\"LGMD1B<\/a><\/p>\n

Idade:<\/strong> 27 anos de idade<\/p>\n

Pa\u00eds:<\/strong> \u00a0\u00a0Pa\u00edses Baixos<\/p>\n

LGMD Sub-tipo:<\/strong> \u00a0\u00a0LGMD1B \/ Laminopatia<\/p>\n

\u00a0<\/strong><\/p>\n

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

Foi-me diagnosticada aos 4 anos de idade LGMD, mas o subtipo era desconhecido. Aos 23 anos, fiz um teste de ADN, que era relativamente recente na Holanda, e foi nessa altura que descobriram que eu tinha LGMD tipo 1B.<\/p>\n

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

A minha m\u00e3e reparou que eu tinha dificuldade em subir as escadas. A minha irm\u00e3 \u00e9 1 ano e 9 meses mais nova e j\u00e1 conseguia subir escadas, mas eu ainda tinha de usar os meus bra\u00e7os para me ajudar a subir as escadas. Eu tamb\u00e9m nasci com heterocromia iridum (olhos de duas cores (com um olho cego)) e um palato cisis (uma abertura no palato), por isso os meus pais pensaram que eu tinha algo mais.<\/p>\n

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

N\u00e3o, sou o \u00fanico at\u00e9 \u00e0 data. Procur\u00e1mos no nosso historial mas n\u00e3o encontr\u00e1mos nada que dissesse que outras pessoas da fam\u00edlia tinham LGMD.<\/p>\n

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

O maior desafio \u00e9 ter de aceitar todas as perdas relativas \u00e0s coisas f\u00edsicas que j\u00e1 n\u00e3o posso fazer. Por vezes, a minha cabe\u00e7a n\u00e3o consegue acompanhar.<\/p>\n

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

As minhas maiores realiza\u00e7\u00f5es s\u00e3o acabar a faculdade, encontrar a minha alma g\u00e9mea e comprar uma casa juntos.<\/p>\n

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

N\u00e3o sei bem porque n\u00e3o sei como \u00e9 n\u00e3o ter LGMD. Eu tenho muita paci\u00eancia. Talvez seja por causa de toda a espera que temos de fazer para obter as coisas de que precisamos para funcionar nas nossas vidas...., sabe, coisas como cadeiras de rodas e outras coisas.<\/p>\n

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

A LGMD \u00e9 uma doen\u00e7a muito frustrante. As pessoas que vivem com a LGMD lidam com perdas dia ap\u00f3s dia.<\/p>\n

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

Se eu pudesse ser curada amanh\u00e3, dan\u00e7aria com o meu namorado numa discoteca a noite toda! E ia de f\u00e9rias para fazer caminhadas.<\/p>","protected":false},"excerpt":{"rendered":"

05\/15\/2015 Name:\u00a0 Marjolein\u00a0\u00a0 Age: 27 yrs. old Country: \u00a0\u00a0The Netherlands […]<\/p>","protected":false},"author":1,"featured_media":663,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,17],"class_list":["post-662","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-netherlands"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Marjolein<\/title>\n<meta name=\"description\" content=\"Marjolein who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/05\/15\/marjolein\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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