Quais foram os seus primeiros sintomas<\/strong>:<\/p>\nIsso n\u00e3o \u00e9 assim t\u00e3o f\u00e1cil de dizer. Agora sei para onde tenho de olhar, surgiram muitos exemplos das minhas mem\u00f3rias; na minha inf\u00e2ncia, t\u00ednhamos uma escada muito inclinada \u00e0 volta da nossa casa, onde sempre tive dificuldade em subir porque os degraus eram muito curtos. Na adolesc\u00eancia, comecei a praticar snowboard, onde n\u00e3o era capaz de exercer muita press\u00e3o na parte da frente da prancha. Quando era jovem adulto, n\u00e3o conseguia saltar ao som da m\u00fasica nas discotecas. Aos 24\/25 anos, apercebi-me de que n\u00e3o era capaz de me manter em p\u00e9 e que os meus m\u00fasculos da barriga da perna n\u00e3o existiam de facto. Nos \u00faltimos anos, apercebi-me de que os m\u00fasculos das minhas pernas e bra\u00e7os estavam a encurtar.<\/p>\n
Aos 18 anos, o meu m\u00e9dico disse-me que tinha valores demasiado elevados de creatina quinase no sangue. Eram cerca de 250-300, demasiado baixos para doen\u00e7as bem conhecidas e demasiado altos para serem normais. Agora sei que este foi o primeiro indicador m\u00e9dico da Miyoshi.<\/p>\n
Tem outros familiares que sofrem de LGMD:<\/strong><\/p>\nSim, a minha irm\u00e3 tamb\u00e9m tem LGMD. Os seus sintomas (ficar em bicos de p\u00e9s, creatina quinase) s\u00e3o os mesmos, mas ela parece ser menos afetada.<\/p>\n
Quais s\u00e3o, na sua opini\u00e3o, os maiores desafios de viver com a LGMD?<\/strong>:<\/p>\nNa minha opini\u00e3o, o maior desafio \u00e9 aceitar este desafio! No primeiro momento ap\u00f3s o diagn\u00f3stico, foi dif\u00edcil de aceitar. \u00c9 preciso ter for\u00e7a psicol\u00f3gica para lidar com isso. Al\u00e9m disso, quando se olha para a evolu\u00e7\u00e3o da doen\u00e7a, n\u00e3o se deve sobrevalorizar ou subvalorizar os sintomas e os efeitos. Ao olharmos para o futuro, temos sempre de planear as coisas tendo em mente a LGMD (talvez precisemos de uma cadeira de rodas daqui a 5, 7 ou 10 anos).<\/p>\n
Qual \u00e9 a sua maior realiza\u00e7\u00e3o<\/strong>:<\/p>\nAceitar a LGMD e gostar de fazer coisas que n\u00e3o poderei fazer no futuro.<\/p>\n
Como \u00e9 que a LGMD o influenciou a tornar-se a pessoa que \u00e9 hoje?<\/strong><\/p>\nO meu diagn\u00f3stico surgiu no in\u00edcio do meu mestrado. Para al\u00e9m da licenciatura e do mestrado (estudo a tempo inteiro), trabalhava aos fins-de-semana e nas f\u00e9rias escolares. Agora trabalho a tempo parcial e tenho uma boa raz\u00e3o para desfrutar do meu tempo de lazer com a minha mulher, os nossos c\u00e3es e o nosso jardim. Dou mais valor ao que tenho agora.<\/p>\n
O que quer que o mundo saiba sobre a LGMD<\/strong>:<\/p>\nQue existe. Penso que h\u00e1 muitos casos n\u00e3o registados de LGMD.<\/p>\n
Se a sua LGMD pudesse ser \"curada\" amanh\u00e3, qual seria a primeira coisa que gostaria de fazer?<\/strong>:<\/p>\nAcabei de perder a minha carta de condu\u00e7\u00e3o de cami\u00f5es e autocarros por causa da Miyoshi. N\u00e3o era apenas um trabalho para financiar os meus estudos, era tamb\u00e9m o meu passatempo. Por isso, recuperava-a e conduzia por a\u00ed.<\/p>\n
<\/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>\n
<\/p>","protected":false},"excerpt":{"rendered":"
01\/30\/2016 LGMD \u201cSpotlight interview\u201d Name:\u00a0 Thomas\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 AGE: 31 COUNTRY: Switzerland […]<\/p>","protected":false},"author":1,"featured_media":1139,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,58],"class_list":["post-1138","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-switzerland"],"acf":[],"yoast_head":"\n
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<\/a><\/p>\n