{"id":1112,"date":"2016-01-18T11:30:03","date_gmt":"2016-01-18T17:30:03","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1112"},"modified":"2016-01-18T11:30:03","modified_gmt":"2016-01-18T17:30:03","slug":"laurence","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Laurence"},"content":{"rendered":"

ENTREVISTA \"LGMD SPOTLIGHT\" <\/strong>– 01\/18\/2016<\/em><\/p>\n

Nome<\/strong>: Laurence \u00a0\u00a0\u00a0Idade<\/strong>: 49\"LGMD2A<\/a><\/p>\n

Pa\u00eds<\/strong>: Fran\u00e7a<\/p>\n

LGMD Sub-tipo<\/strong>: LGMD2A \/ Calpainopatia<\/p>\n

 <\/p>\n

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

Foi-me diagnosticado aos 42 anos de idade.<\/p>\n

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

Os sintomas que experimentei inclu\u00edam: grande fadiga, dificuldades em subir escadas, quedas ao caminhar num terreno irregular e dificuldade em levantar-me de uma posi\u00e7\u00e3o sentada.<\/p>\n

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

N\u00e3o, eu sou o \u00fanico membro da fam\u00edlia com LGMD2A.<\/strong><\/p>\n

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

A evolu\u00e7\u00e3o \u00e9 bastante lenta, mas tenho de ter muito cuidado para ter uma vida regular, caso contr\u00e1rio \u00e9 pior e a evolu\u00e7\u00e3o \u00e9 mais r\u00e1pida quando estou cansada e a atrofia \u00e9 mais forte. \u00c9 dif\u00edcil concili\u00e1-la com actividades privadas ou profissionais.<\/p>\n

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

Tento continuar a trabalhar, o que \u00e9 importante para n\u00e3o pensar demasiado na doen\u00e7a e continuar a trabalhar.<\/p>\n

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

Ao lutar contra as dores e as dificuldades f\u00edsicas, a doen\u00e7a ensina-me a definir prioridades, mas tamb\u00e9m a ter consci\u00eancia de que h\u00e1 sempre\u00a0 <\/strong>pessoas que est\u00e3o mais doentes do que voc\u00ea, pelo que deve ser otimista.<\/p>\n

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

Quero que o mundo saiba que a LGMD faz parte das doen\u00e7as \u00f3rf\u00e3s, pelo que \u00e9 dif\u00edcil angariar os fundos necess\u00e1rios para encontrar um tratamento eficaz. \u00c9 importante falar sobre a LGMD \u00e0 nossa volta, mas acima de tudo \u00e0 comunidade m\u00e9dica e aos m\u00e9dicos de cl\u00ednica geral, que podem ajudar os seus doentes a dirigir-se a centros m\u00e9dicos adequados. Tenho um exemplo muito pessoal para ilustrar este ponto - antes de ser diagnosticado, o meu m\u00e9dico de fam\u00edlia disse-me que os meus sintomas se deviam a um esgotamento nervoso!!!<\/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 andar naturalmente sem bengala e de visitar o mundo inteiro, de poder ir para o estrangeiro com a minha fam\u00edlia, sentindo-me livre!<\/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":"

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