{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Melanie"},"content":{"rendered":"

LGMD \"Entrevista em destaque\"<\/p>\n

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NOME<\/strong>: Melanie \u00a0 IDADE<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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PA\u00cdS:<\/strong> EUA<\/span><\/span><\/div>\n<\/div>\n
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LGMD Sub-tipo<\/strong>: LGMD2b (Disferlinopatia\/miopatia de Miyoshi) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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COM QUE IDADE FOI DIAGNOSTICADO:<\/strong><\/div>\n<\/div>\n
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Foi-me diagnosticado uma semana antes do meu 29\u00ba anivers\u00e1rio.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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N\u00e3o conseguia levantar-me sobre os dedos dos p\u00e9s, tinha dedos em martelo (deformidade do p\u00e9) e estava sempre a sentir dores e cansa\u00e7o.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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TEM OUTROS FAMILIARES QUE SOFREM DE LGMD:<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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N\u00e3o, nem um!<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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O QUE \u00c9 QUE CONSIDERA SER O MAIOR DESAFIO DE VIVER COM LGMD: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Perder a capacidade de realizar tarefas e actividades quotidianas tornou a vida bastante dif\u00edcil. \u00c9 preciso planear tudo com anteced\u00eancia. Tamb\u00e9m se torna dif\u00edcil quando as pessoas n\u00e3o compreendem este facto. Quando n\u00e3o parece estar doente, as pessoas n\u00e3o levam as suas necessidades a s\u00e9rio.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Obter o meu mestrado e conseguir um \u00f3timo emprego no Governo Federal (estando doente todos os dias).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Quando me foi diagnosticado pela primeira vez, senti-me desamparada e sozinha. N\u00e3o conhecia mais nenhuma pessoa com esta forma de DM e estava assustada. Em vez de ficar amuada ou deixar que isso me deprimisse, pensei \"porque n\u00e3o sair e fazer alguma coisa?\". Por isso, comecei a investigar a MDA e a forma de angariar fundos. Criei uma equipa MDA Muscle Walk e, desde ent\u00e3o, todos os anos tenho feito uma. Depois decidi que iria fazer tudo o que pudesse enquanto ainda pudesse (uma vez que estou a perder a capacidade de andar). E foi o que fiz. Viajei por todo o lado e para alguns s\u00edtios sozinha. At\u00e9 fiz sky diving. Penso que este diagn\u00f3stico fez de mim uma pessoa ainda mais positiva. Tornou-me certamente uma pessoa ainda mais forte. Muitas das experi\u00eancias que tive nos \u00faltimos 4 anos s\u00e3o o resultado direto de eu ter enfrentado a LGMD e ter provado que as probabilidades estavam erradas.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD:<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Em primeiro lugar, a doen\u00e7a n\u00e3o nos define. Somos quem somos e s\u00f3 por acaso temos esta doen\u00e7a terr\u00edvel. Em segundo lugar, s\u00f3 porque temos bom aspeto, n\u00e3o significa que nos sintamos bem. Terceiro, a distrofia muscular n\u00e3o \u00e9 esclerose m\u00faltipla.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE FARIA.<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Dan\u00e7ar como eu costumava fazer! Depois fazer caminhadas em todos os Parques Nacionais e tirar muitas fotografias fant\u00e1sticas. Depois, correr uma maratona ou fazer uma corrida de obst\u00e1culos.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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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 <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

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