{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Natasha"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"ENTREVISTA EM DESTAQUE\"<\/h3>\n\n\n\n

Nome<\/strong>: Natasha \nIdade<\/strong>:\n25 anos de idade<\/p>\n\n\n\n

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

LGMD Sub-tipo<\/strong>: LGMD D1 DNAJB6-related (Anteriormente LGMD tipo\n1D)<\/p>\n\n\n\n

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

Foi-me diagnosticado aos 23 anos de idade.<\/p>\n\n\n\n

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

O nosso subtipo \u00e9 de in\u00edcio tardio, pelo que atualmente n\u00e3o tenho sintomas, embora na minha inf\u00e2ncia houvesse pequenas coisas que fazem mais sentido agora que sei do meu diagn\u00f3stico. Enquanto crescia, n\u00e3o conseguia correr t\u00e3o depressa como os meus colegas e tinha dificuldade em dan\u00e7ar para me levantar do ch\u00e3o sem usar as m\u00e3os, por exemplo.<\/p>\n\n\n\n

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

Sim, o meu pai, o meu tio (do lado da fam\u00edlia do meu pai) e o meu av\u00f4 paterno\ne o meu av\u00f4 paterno t\u00eam todos o mesmo diagn\u00f3stico.<\/p>\n\n\n\n

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

O maior desafio para mim tem sido o facto de saber que um dia\na minha mobilidade ser\u00e1 menor do que \u00e9 atualmente e que poderei n\u00e3o ser capaz de continuar\no estilo de vida ativo que gosto de ter atualmente.<\/p>\n\n\n\n

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

N\u00e3o tenho a certeza da minha maior realiza\u00e7\u00e3o... teria de dizer os la\u00e7os familiares e de amizade que mantive. Al\u00e9m disso, a comunidade que constru\u00edmos e estamos a construir para as formas dominantes de LGMD atrav\u00e9s da LGMD-1D DNAJB6 Foundation, que \u00e9 uma funda\u00e7\u00e3o p\u00fablica sem fins lucrativos cuja miss\u00e3o \u00e9 manter um local central para que os indiv\u00edduos diagnosticados com Distrofia Muscular das Cinturas dos Membros tipo 1D (LGMD1D) se encontrem, consolidem not\u00edcias relevantes e lancem esfor\u00e7os de angaria\u00e7\u00e3o de fundos para fazer avan\u00e7ar a investiga\u00e7\u00e3o.  https:\/\/lgmd1d.org<\/a>  Cri\u00e1mos tamb\u00e9m um Registo de Doentes para todos os doentes diagnosticados com uma forma autoss\u00f3mica dominante de LGMD.  <\/p>\n\n\n\n

Como \u00e9 que a LGMD o influenciou a tornar-se a\npessoa que voc\u00ea \u00e9 hoje:<\/strong><\/p>\n\n\n\n

Dou por mim sempre a pensar no futuro, na forma como as minhas ac\u00e7\u00f5es\ncomo as minhas ac\u00e7\u00f5es v\u00e3o afetar o meu corpo, as pessoas que amo e a fam\u00edlia que espero formar. Isso fez-me despertar a minha paci\u00eancia e tentar\nlevar um estilo de vida menos intenso fisicamente.<\/p>\n\n\n\n

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

Precisamos de continuar\na espalhar a palavra e a ligarmo-nos de forma a ajudar na cura. Por exemplo, um registo de doentes com LGMD\n(LGMD tipo 1) ser\u00e1 vital para a investiga\u00e7\u00e3o e para encontrar uma cura.<\/p>\n\n\n\n

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

Se amanh\u00e3 estivesse curada, iria dan\u00e7ar para festejar! <\/p>\n\n\n\n

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

LGMD “SPOTLIGHT INTERVIEW” Name:  Natasha  Age: 25 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Natasha - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Natasha - 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