{"id":416,"date":"2015-02-12T22:30:56","date_gmt":"2015-02-13T04:30:56","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=161"},"modified":"2015-02-12T22:30:56","modified_gmt":"2015-02-13T04:30:56","slug":"161","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Lydia"},"content":{"rendered":"

02\/12\/2014:\"LGMD2B<\/a><\/p>\n

NOME<\/strong>: L\u00eddia<\/p>\n

Idade<\/strong>: 45<\/p>\n

PA\u00cdS<\/strong>: Estados Unidos<\/p>\n

SUB-TIPO LGMD<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

COM QUE IDADE FOI DIAGNOSTICADO:<\/strong> 41<\/p>\n

QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS:<\/strong>
\nOs meus primeiros sintomas inclu\u00edam: joelhos a saltar do s\u00edtio, dores nas pernas, nos p\u00e9s, no peito, no pesco\u00e7o e nos bra\u00e7os, quedas, letargia, andar estranho de pato.<\/p>\n

TEM OUTROS FAMILIARES QUE SOFREM DE LGMD:<\/strong>
\nN\u00e3o<\/p>\n

QUAIS S\u00c3O, NA SUA OPINI\u00c3O, OS MAIORES DESAFIOS DE VIVER COM LGMD:<\/strong>
\nO car\u00e1cter progressivo da doen\u00e7a \u00e9 assustador. A letargia que a LGMD provoca tamb\u00e9m \u00e9 debilitante. Para al\u00e9m da doen\u00e7a, considero que a falta de acessibilidade e as atitudes sociais em rela\u00e7\u00e3o \u00e0s pessoas com defici\u00eancia s\u00e3o muito limitadoras.<\/p>\n

QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O:<\/strong>
\nEsta \u00e9 uma tarefa dif\u00edcil. Conseguir trabalhar, cuidar de crian\u00e7as pequenas, de uma m\u00e3e com dem\u00eancia e do meu pai idoso (com a ajuda dos meus irm\u00e3os) e tirar um bacharelato em Servi\u00e7o Social. Olhando para tr\u00e1s, fico espantada por ter conseguido fazer tudo isto.<\/p>\n

COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE?<\/strong>
\nAumentou a minha empatia para com os outros e foi o impulso para o desenvolvimento de uma consci\u00eancia da defici\u00eancia.<\/p>\n

O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD:<\/strong>
\nEm primeiro lugar, o facto de a conhecerem de todo. Mesmo a maior parte dos profissionais de sa\u00fade n\u00e3o tem conhecimento desta doen\u00e7a.<\/p>\n

Em segundo lugar, \u00e9 progressiva e debilitante.<\/p>\n

Em terceiro lugar, sinto-me bastante seguro em dizer que a maioria de n\u00f3s que a temos preferiria que n\u00e3o fosse assim, e \u00e9 por isso que a investiga\u00e7\u00e3o e a sensibiliza\u00e7\u00e3o do p\u00fablico s\u00e3o t\u00e3o vitais.<\/p>\n

Em quarto lugar, e isto \u00e9 um exemplo, recentemente, num dos nossos grupos em linha, as pessoas com a minha doen\u00e7a estavam a discutir as cinco coisas que gostariam de fazer se estivessem curadas. Coisas como pegar nos filhos ao colo e dar abra\u00e7os aos seus entes queridos. Esta \u00e9 a realidade perniciosa da LGMD.<\/p>\n

SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER:<\/strong>
\nGostaria muito de poder fazer uma caminhada numa zona arborizada com a minha fam\u00edlia.<\/p>","protected":false},"excerpt":{"rendered":"

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