{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"INDIV\u00cdDUO COM LGMD: Jillena"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/06\/LGMD2A-Jillena-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2728\"\/><\/figure>\n\n\n\n<p><strong>LGMD\n\"Entrevista em destaque\"<\/strong><\/p>\n\n\n\n<p><strong>Nome<\/strong>:  Jillena\n&nbsp;<strong>Idade<\/strong>: 32 anos de idade<\/p>\n\n\n\n<p><strong>Pa\u00eds<\/strong>:  Estados Unidos\nEstados Unidos<\/p>\n\n\n\n<p><strong>LGMD Sub-tipo<\/strong>: LGMD2A - uma forma de Calpainopatia<\/p>\n\n\n\n<p><strong>COM QUE IDADE FOI DIAGNOSTICADO <\/strong>:<\/p>\n\n\n\n<p>Foi-me inicialmente diagnosticada a LGMD aos\nidade de 21 anos.  E depois, recebi a confirma\u00e7\u00e3o gen\u00e9tica\nconfirma\u00e7\u00e3o gen\u00e9tica do meu subtipo LGMD2A h\u00e1 alguns meses.<\/p>\n\n\n\n<p><strong>QUAIS FORAM OS SEUS PRIMEIROS SINTOMAS <\/strong>:<\/p>\n\n\n\n<p>Depois de ter o meu segundo filho, comecei a\na notar que as escadas se tornaram dif\u00edceis para mim. De facto, eu subia-as a rastejar. I\ntinha escoliose, por isso atribu\u00ed a minha dificuldade em subir escadas \u00e0 escoliose.\nMas, depois, tive o meu segundo filho e n\u00e3o conseguia levantar a perna para subir um passeio\nfacilmente.  Al\u00e9m disso, sempre fui magra e\nnunca soube porqu\u00ea. A minha m\u00e3e temia que algo estivesse errado e convenceu-me a ir ao m\u00e9dico.\nm\u00e9dico.<\/p>\n\n\n\n<p><strong>TEM OUTROS MEMBROS DA FAM\u00cdLIA QUE\nT\u00caM LGMD :<\/strong><\/p>\n\n\n\n<p>N\u00e3o foi diagnosticada LGMD a mais ningu\u00e9m na minha fam\u00edlia, mas a minha m\u00e3e tinha um irm\u00e3o que vivia com uma defici\u00eancia f\u00edsica.  Pensamos que ele tinha Distrofia Muscular de Duchenne.<\/p>\n\n\n\n<p><strong>QUAIS S\u00c3O, NA SUA OPINI\u00c3O, OS MAIORES\nDESAFIOS EM VIVER COM LGMD <\/strong>:<\/p>\n\n\n\n<p>A primeira coisa \u00e9 a luta pela qual a minha fam\u00edlia tem de passar e que\nn\u00e3o passariam se eu n\u00e3o tivesse esta doen\u00e7a. Em segundo lugar, \u00e9 o facto de n\u00e3o poder ir, ir, ir como costumava\ncomo dantes. Os meus bra\u00e7os e pernas est\u00e3o mais fracos, o que faz com que seja cansativo fazer muita coisa.<\/p>\n\n\n\n<p><strong>QUAL \u00c9 A SUA MAIOR REALIZA\u00c7\u00c3O <\/strong>:<\/p>\n\n\n\n<p>A minha maior realiza\u00e7\u00e3o \u00e9 a minha mais recente mudan\u00e7a de atitude.   I\npercebi que ser negativo em rela\u00e7\u00e3o \u00e0 minha doen\u00e7a e ao meu destino n\u00e3o estava a ajudar ningu\u00e9m.  N\u00e3o s\u00f3 decidi viver a vida olhando atrav\u00e9s de um par de \u00f3culos\natrav\u00e9s de um par de \u00f3culos diferente, mas tamb\u00e9m decidi partilhar esses\nesses \u00f3culos com o mundo atrav\u00e9s do meu percurso de vida numa p\u00e1gina do Facebook que criei.<\/p>\n\n\n\n<p><strong>COMO \u00c9 QUE A LGMD O INFLUENCIOU A\nPARA SE TORNAR A PESSOA QUE \u00c9 HOJE:<\/strong><\/p>\n\n\n\n<p>Quando aceitei que tinha esta doen\u00e7a\ne que n\u00e3o tinha de ser infeliz, criei uma p\u00e1gina no Facebook.  Comecei a dar conselhos sobre como ser\nser positiva. Desde ent\u00e3o, tornou-se muito mais do que isso. Agora tenho tantos amigos no Facebook\nque se tornaram um sistema de apoio espetacular. Al\u00e9m disso, partilhei a minha hist\u00f3ria durante um discurso para a angaria\u00e7\u00e3o de fundos Shamrock\npara a angaria\u00e7\u00e3o de fundos para a MDA.  Transformei-me\nnuma pessoa que s\u00f3 quer que toda a gente veja o seu valor! H\u00e1 dez anos atr\u00e1s, eu n\u00e3o\nme preocupava comigo pr\u00f3pria - quanto mais com qualquer outra pessoa.<\/p>\n\n\n\n<p><strong>O QUE VOC\u00ca QUER QUE O MUNDO SAIBA\nSOBRE A LGMD <\/strong>:<\/p>\n\n\n\n<p>Quero que o mundo saiba que a LGMD \u00e9 uma doen\u00e7a extremamente dif\u00edcil\nde lidar com ela, porque nos tira a independ\u00eancia. \u00c0 medida que\n\u00e0 medida que envelhecemos, os nossos m\u00fasculos enfraquecem, o que diminui a mobilidade. Isso \u00e9 dif\u00edcil,\nespecialmente quando se tem tr\u00eas filhos para correr.<\/p>\n\n\n\n<p><strong>SE A SUA LGMD PUDESSE SER \"CURADA\"\nAMANH\u00c3, QUAL SERIA A PRIMEIRA COISA QUE GOSTARIA DE FAZER <\/strong>:<\/p>\n\n\n\n<p>Iria fazer caminhadas\nnas montanhas do Colorado com a minha fam\u00edlia!<\/p>\n\n\n\n<p>* Para ler mais \"LGMD Spotlight Interviews\" ou para se voluntariar para uma pr\u00f3xima entrevista, por favor visite o nosso website em <a href=\"https:\/\/www.lgmd-info.org\/pt\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; Jillena &nbsp;Age: 32 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Jillena - 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=\"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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