{"id":3276,"date":"2020-06-16T14:26:06","date_gmt":"2020-06-16T19:26:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3276"},"modified":"2024-02-09T14:24:37","modified_gmt":"2024-02-09T14:24:37","slug":"ibrahim","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: \u0130brahim"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

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

Nome<\/strong>: \u0130brahim                                 Idade<\/strong>: 55 anos de idade<\/p>\n\n\n\n

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

LGMD Sub-tipo<\/strong>: LGMD 2B\/R2 relacionado com a disferlina<\/p>\n\n\n\n

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

Foi-me diagnosticado aos 25 anos de idade.<\/p>\n\n\n\n

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

No in\u00edcio, sentia-me cansado com os movimentos repetitivos. A fraqueza parecia come\u00e7ar nos tornozelos. Era mais no p\u00e9 esquerdo.<\/strong><\/p>\n\n\n\n

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

N\u00e3o, n\u00e3o h\u00e1 ningu\u00e9m na minha fam\u00edlia que tenha este mesmo diagn\u00f3stico.<\/p>\n\n\n\n

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

No in\u00edcio, senti um ligeiro cansa\u00e7o. Como era professor, os longos per\u00edodos de p\u00e9 pareciam afetar negativamente o meu desempenho profissional. Comecei a andar com uma bengala simples, mas tinha dificuldade em ir para o trabalho. Comecei a usar cadeiras.<\/p>\n\n\n\n

Uma vez que se trata de um tipo de doen\u00e7a muscular lentamente progressiva, tive dificuldade em explicar-me \u00e0s pessoas que me rodeavam.<\/strong><\/p>\n\n\n\n

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

Depois de deixar a profiss\u00e3o de professor, pensei que devia tocar a vida dos outros. Em primeiro lugar, trabalhei para a T\u00fcrkiye Kas Hastal\u0131klar\u0131 Derne\u011fi (Organiza\u00e7\u00e3o de Doen\u00e7as Musculares da Turquia - como a MDA). Mais tarde, trabalhei tamb\u00e9m para a HASGAP (Rede de Volunt\u00e1rios de Doentes). Continuo a trabalhar voluntariamente para a sec\u00e7\u00e3o de doen\u00e7as musculares de Izmir-Turquia. Tenho uma paix\u00e3o pela poesia e pela escrita desde os meus anos de escola secund\u00e1ria. Escrevi dois livros de poesia (Moon Blue Nights e a Shore-Free Sea).<\/p>\n\n\n\n

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

Viver com a LGMD permitiu-me levar a morte no bolso, permitindo-me saborear mais da vida. Tornou-a mais produtiva. Levou a vida a tocar mais.<\/p>\n\n\n\n

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

A \u00fanica forma de o mundo conhecer o nosso mundo \u00e9 fazer a diferen\u00e7a. N\u00e3o podemos falar em mudar a nossa qualidade de vida se n\u00e3o sonharmos, produzirmos e partilharmos o que produzimos. A maioria de n\u00f3s luta contra as suas doen\u00e7as. Se n\u00e3o houver sonho e esfor\u00e7o nesse esfor\u00e7o, n\u00e3o podemos mudar nada. As mentalidades que n\u00e3o sonham e n\u00e3o produzem n\u00e3o conseguem entender isso.<\/p>\n\n\n\n

Quero que eles saibam que o nosso cora\u00e7\u00e3o e o nosso c\u00e9rebro est\u00e3o a funcionar.<\/p>\n\n\n\n

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

Eu faria mudan\u00e7as na minha imagina\u00e7\u00e3o. Correria entre as gal\u00e1xias e brincaria nos parques infantis das gal\u00e1xias. Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para ser apresentado numa pr\u00f3xima entrevista, visite o nosso s\u00edtio Web em: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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