{"id":961,"date":"2015-07-22T13:35:05","date_gmt":"2015-07-22T18:35:05","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=961"},"modified":"2015-07-22T13:35:05","modified_gmt":"2015-07-22T18:35:05","slug":"leanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/07\/22\/leanne\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Leanne"},"content":{"rendered":"

07\/22\/2015:<\/p>\n

NOME<\/strong>: Leanne IDADE<\/strong>: 50 anos de idade\"LGMD2A<\/a>
\nPA\u00cdS<\/strong>: Austr\u00e1lia
\nLGMD Sub-tipo<\/strong>: LGMD2A \/ Calpainopatia<\/p>\n

COM QUE IDADE FOI DIAGNOSTICADO<\/strong>:
\nFoi-me diagnosticada aos 42 anos de idade atrav\u00e9s de uma biopsia muscular.<\/p>\n

QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS<\/strong>:
\nEstava a perder peso \u00e0 volta das ancas e dos gl\u00fateos. Ap\u00f3s o diagn\u00f3stico, outras coisas se encaixaram, ou seja, maior dificuldade em levantar-me de um agachamento, n\u00e3o me sentir com energia ap\u00f3s o trabalho no gin\u00e1sio e n\u00e3o subir escadas.<\/p>\n

TEM OUTROS FAMILIARES QUE SOFREM DE LGMD<\/strong>:
\nN\u00e3o, eu sou o \u00fanico membro da fam\u00edlia a quem foi diagnosticada a LGMD.<\/p>\n

QUAIS S\u00c3O, NA SUA OPINI\u00c3O, OS MAIORES DESAFIOS DE VIVER COM A LGMD?<\/strong>:
\nFalta de espontaneidade nas actividades, especialmente nas viagens a solo, ou seja, nas \"brincadeiras\" com a m\u00e1quina fotogr\u00e1fica, nas compras.<\/p>\n

Ter de come\u00e7ar a pedir que as coisas sejam feitas, quando me sinto sempre mais confort\u00e1vel a ajudar\/fazer<\/p>\n

Ter de reavaliar e redefinir os meus objectivos e esperan\u00e7as para o futuro, de modo a adaptar-me \u00e0s limita\u00e7\u00f5es que existem atualmente e que continuar\u00e3o a existir sem orienta\u00e7\u00f5es claras sobre como e quando o LMGD ir\u00e1 progredir devido \u00e0 sua natureza inconsistente<\/p>\n

QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O<\/strong>:
\nEspero ser uma pessoa boa e atenciosa em todas as minhas rela\u00e7\u00f5es e ter ajudado a incutir nos meus filhos jovens adultos uma boa moral e valores.<\/p>\n

COMO \u00c9 QUE A LGMD O INFLUENCIOU A TORNAR-SE A PESSOA QUE \u00c9 HOJE<\/strong>:
\nEstou definitivamente mais emp\u00e1tica e com menos pressa (hahaha) e mais recetiva ao facto de a vida nem sempre ser um \"mar de rosas\"<\/p>\n

O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A LGMD<\/strong>:
\nGostaria que fosse t\u00e3o facilmente identific\u00e1vel entre o p\u00fablico como as doen\u00e7as como a ELA (MND); ainda est\u00e3o a lutar pelo reconhecimento, mas t\u00eam um perfil indiscutivelmente mais elevado do que a doen\u00e7a de Alzheimer, o cancro, a esclerose m\u00faltipla e muitas outras, para ajudar as pessoas a compreender e a informar-se sobre as necessidades necess\u00e1rias.<\/p>\n

SE A SUA LGMD PUDESSE SER \"CURADA\" AMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER<\/strong>:
\nTodos t\u00eam o mesmo valor - fazer um grande passeio em fam\u00edlia, levar a minha m\u00e1quina fotogr\u00e1fica para a praia, viajar para todo o lado sem planeamento pr\u00e9vio, redecorar e jardinar!!!<\/p>\n

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

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