{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"Entrevista em destaque\"<\/p>\n

NOME<\/strong>: Maram\u00a0\u00a0\u00a0 IDADE<\/strong>: 26 anos\"LGMD2E<\/a><\/p>\n

PA\u00cdS<\/strong>: Palestina<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

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

Foi-me diagnosticada distrofia muscular aos 10 anos de idade. Quando tinha 26 anos, recebi a confirma\u00e7\u00e3o gen\u00e9tica do meu diagn\u00f3stico de LGMD2E.<\/p>\n

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

Quando tinha 3 anos de idade, os meus pais notaram que a minha marcha era inst\u00e1vel e que me era dif\u00edcil levantar do ch\u00e3o.<\/p>\n

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

N\u00e3o, sou o \u00fanico na minha fam\u00edlia.<\/p>\n

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

Os desafios s\u00e3o muitos. Coisas simples para muitas pessoas s\u00e3o os meus maiores desafios, mas ir \u00e0 casa de banho e mudar de posi\u00e7\u00e3o de um lado para o outro enquanto durmo fazem-me sentir muito fraca.<\/p>\n

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

Bem, no meu pa\u00eds as pessoas n\u00e3o sabem nada sobre a LGMD. Estou a tentar todos os dias aumentar a sensibiliza\u00e7\u00e3o para a doen\u00e7a atrav\u00e9s das redes sociais. Ajudei muitos doentes no meu pa\u00eds e no mundo \u00e1rabe a fazer o teste gen\u00e9tico para confirmar o diagn\u00f3stico e a obter o equipamento de que precisamos para nos facilitar a vida. Tamb\u00e9m contactei os meus doentes de todo o mundo e torn\u00e1mo-nos amigos \u00edntimos. S\u00e3o eles os meus maiores \u00eaxitos.<\/p>\n

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

Penso que me tornou mais forte de uma forma ou de outra. Tornei-me mais atencioso com as pessoas \u00e0 minha volta. Aprecio cada pequena b\u00ean\u00e7\u00e3o na minha vida, incluindo a minha grande fam\u00edlia. Tornei-me mais pr\u00f3ximo de Deus. Penso que me mudou de uma forma positiva e gosto de quem sou hoje.<\/p>\n

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

Quero que eles saibam que n\u00e3o somos assim t\u00e3o diferentes das pessoas normais. O que aconteceu foi que um simples erro ou muta\u00e7\u00e3o gen\u00e9tica causou-me dificuldade em mover-me enquanto eles podem. A causa n\u00e3o \u00e9 assim t\u00e3o complicada e se a compreendermos, podemos encontrar o tratamento.<\/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 abra\u00e7ar os meus pais com muita for\u00e7a e nunca os deixar partir. Estou sempre a pensar como a vida seria dif\u00edcil sem eles.<\/p>\n

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

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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