{"id":1059,"date":"2015-11-30T11:36:31","date_gmt":"2015-11-30T17:36:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1059"},"modified":"2015-11-30T11:36:31","modified_gmt":"2015-11-30T17:36:31","slug":"molly","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2015\/11\/30\/molly\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Molly"},"content":{"rendered":"<p>11\/30\/2015<\/p>\n<p><strong>NOME<\/strong>:  Molly\u00a0\u00a0 <strong>\u00a0IDADE<\/strong>: 29 anos<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/11\/LGMD2B-Molly.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1060 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/11\/LGMD2B-Molly-300x169.png\" alt=\"LGMD2B - Molly\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>PA\u00cdS:<\/strong>\u00a0 Estados Unidos<\/p>\n<p><strong>LGMD Sub-tipo<\/strong>:   LGMD2B: disferlinopatia\/Miopatia de Miyoshi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Com que idade foi diagnosticado<\/strong>:<\/p>\n<p>Comecei a apresentar sintomas aos 17 anos e, na altura, disseram-me que sofria de Guillain-Barr\u00e9. Quando tinha 19 anos, os meus sintomas iniciais voltaram e agravaram-se, mas desta vez foi-me diagnosticada polimiosite.  Depois de 3 anos a entrar e a sair do hospital, fui finalmente diagnosticada com miopatia de Miyoshi atrav\u00e9s de testes de ADN, aos 22 anos.<\/p>\n<p><strong>Quais foram os seus primeiros sintomas<\/strong>:<\/p>\n<p>Os meus primeiros sintomas foram dificuldade em subir escadas e em levantar-me de cadeiras. Notei uma diminui\u00e7\u00e3o significativa da atividade atl\u00e9tica por volta dos 15 anos, mas atribu\u00ed-a \u00e0 pregui\u00e7a da adolesc\u00eancia. S\u00f3 quando estava no primeiro ano do liceu e n\u00e3o conseguia cumprir os meus requisitos de Educa\u00e7\u00e3o F\u00edsica e comecei a cair com frequ\u00eancia \u00e9 que percebi que havia um problema.<\/p>\n<p><strong>Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\n<p>N\u00e3o tenho outros familiares afectados pela LGMD.<\/p>\n<p><strong>Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\n<p>Alguns dos maiores desafios s\u00e3o ver amigos e familiares a participar em actividades f\u00edsicas como corrida, caminhadas, exerc\u00edcio di\u00e1rio e at\u00e9 dan\u00e7a. Fico triste por n\u00e3o poder participar com eles e, por vezes, sinto que estou a perder tempo de qualidade. Outra luta talvez mais dif\u00edcil \u00e9 a luta di\u00e1ria, pois \u00e9 preciso muito mais esfor\u00e7o para me arranjar todas as manh\u00e3s e tamb\u00e9m para realizar tarefas di\u00e1rias que muitos tomam por garantidas, como arrumar o quarto, limpar a casa, lavar a roupa, etc. Tive de aprender a p\u00f4r o meu orgulho de lado e a confiar mais nos amigos e na fam\u00edlia, o que, por si s\u00f3, \u00e9 um desafio.<\/p>\n<p><strong>Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\n<p>Penso que a minha maior realiza\u00e7\u00e3o at\u00e9 \u00e0 data foi o facto de, apesar de ter entrado e sa\u00eddo do hospital durante os meus anos de faculdade, ter continuado a trabalhar e ter finalmente obtido um diploma. Agora, utilizo esse diploma todos os dias como professora. Ensinar foi sempre o meu sonho e consegui-o. Os meus alunos e colegas apoiam-me muito e isso faz com que valha a pena todos os dias.<\/p>\n<p><strong>Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\n<p>A LGMD fez de mim uma pessoa com mais objectivos. Com objectivos para a minha pr\u00f3pria vida, mas tamb\u00e9m com objectivos para as pessoas que me rodeiam. Quando se vive com uma doen\u00e7a que afecta a nossa vida quotidiana, \u00e9 importante rodearmo-nos de pessoas e actividades que tenham significado e preencham a nossa vida, e n\u00e3o perder tempo com coisas insignificantes e insubstanciais.   N\u00e3o tenho a certeza de que me teria apercebido disto t\u00e3o cedo como me apercebi, se n\u00e3o fosse por aquilo que vivo todos os dias.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\n<p>Bem, antes de mais, quero que deixem de pensar que tenho uma forma estranha de esclerose m\u00faltipla. Tamb\u00e9m quero que todos saibam que n\u00f3s, enquanto comunidade, somos valiosos e temos muito para oferecer. O nosso corpo pode n\u00e3o colaborar connosco, mas somos uma comunidade muito inteligente e apaixonada. Al\u00e9m disso, gostaria que o mundo soubesse que a LGMD existe, mas penso que estamos a fazer grandes progressos nessa \u00e1rea.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\n<p>H\u00e1 tantas coisas que eu gostaria de fazer e, obviamente, a maioria delas tem a ver com capacidades f\u00edsicas que eu n\u00e3o possuo. Adorava fazer o Trilho dos Apalaches, ou qualquer outra coisa que implique estar ao ar livre durante longos per\u00edodos de tempo. O, e tamb\u00e9m adorava voltar a saltar, h\u00e1 qualquer coisa de libertador nisso.<\/p>\n<p>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":"<p>11\/30\/2015 NAME:\u00a0 Molly\u00a0\u00a0 \u00a0AGE: 29 years old COUNTRY:\u00a0 United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1060,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1059","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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