{"id":2334,"date":"2018-11-06T12:50:43","date_gmt":"2018-11-06T18:50:43","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2334"},"modified":"2018-11-06T12:50:43","modified_gmt":"2018-11-06T18:50:43","slug":"individual-with-lgmd-heidi","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2018\/11\/06\/individual-with-lgmd-heidi\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Heidi"},"content":{"rendered":"

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

Nome<\/strong>: Heidi\u00a0 Idade<\/strong>: 50 anos de idade\u00a0\"\"<\/a><\/p>\n

Pa\u00eds<\/strong>: Estados Unidos<\/p>\n

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

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

Foi-me diagnosticado aos 33 anos de idade.<\/p>\n

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

Sentia-me frequentemente r\u00edgida e dorida, sobretudo nas pernas, e depois fraqueza.<\/p>\n

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

N\u00e3o h\u00e1 mais ningu\u00e9m na minha fam\u00edlia diagnosticado com LGMD.<\/p>\n

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

Um dos meus principais desafios \u00e9 a dor e a fraqueza di\u00e1rias. Quando me foi diagnosticada a doen\u00e7a, disseram-me que, a dada altura, ficaria t\u00e3o fraca que precisaria de uma cadeira de rodas. N\u00e3o fazia ideia das dores que iria sentir. A atrofia grave dos meus m\u00fasculos exerce demasiada press\u00e3o sobre os outros m\u00fasculos, provocando a sua rotura.<\/p>\n

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

A minha maior realiza\u00e7\u00e3o \u00e9 o facto de ainda conseguir andar com a ajuda de uma bengala.<\/p>\n

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

A Distrofia Muscular das Cinturas dos Membros \u00e9 uma doen\u00e7a para toda a vida que se vai agravando gradualmente. Quero que os outros sejam mais compassivos para com aqueles que sofrem de dores cr\u00f3nicas. N\u00e3o h\u00e1 cura para esta doen\u00e7a.<\/p>\n

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

Se a minha LGMD pudesse ser curada amanh\u00e3, eu iria trabalhar como Tecn\u00f3loga Radiol\u00f3gica. Tamb\u00e9m iria correr e andar de bicicleta com os meus filhos e o meu marido.<\/p>\n

 <\/p>\n

*** Por favor, GOSTEI, COMENTEI e PARTILHEI esta publica\u00e7\u00e3o para ajudar a aumentar a sensibiliza\u00e7\u00e3o para a LGMD!<\/p>\n

*** Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, por favor visite o nosso website em https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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