{"id":1335,"date":"2016-09-27T10:02:53","date_gmt":"2016-09-27T15:02:53","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1335"},"modified":"2016-09-27T10:02:53","modified_gmt":"2016-09-27T15:02:53","slug":"kelci","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/09\/27\/kelci\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Kelci"},"content":{"rendered":"<p><strong>LGMD \"Spotlight r\u00f6portaj\u0131\"<\/strong><\/p>\n<p><strong>\u0130sim<\/strong>:  Kelci \u00a0\u00a0<strong>Ya\u015f<\/strong>: 23 yrs. old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2J-Kelci.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1334 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\/2016\/09\/LGMD2J-Kelci-300x169.png\" alt=\"lgmd2j-kelci\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>: Avustralya<\/p>\n<p><strong>LGMD Alt Tipi<\/strong> (e\u011fer biliniyorsa):  LGMD2J - Titinopati<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 23 ya\u015f\u0131mda yeni te\u015fhis konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>\u0130lk ba\u015fta kald\u0131r\u0131ma veya \u00e7\u0131k\u0131nt\u0131lara \u00e7\u0131karken bilin\u00e7li olarak d\u00fc\u015f\u00fcnmem gerekti\u011fini fark ettim. Daha sonra merdiven \u00e7\u0131kman\u0131n ve y\u00fcr\u00fcme mesafelerinin daha da zorla\u015ft\u0131\u011f\u0131n\u0131 fark ettim.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/p>\n<p>Evet, bir karde\u015fin var.<\/p>\n<p><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n<p>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011fu, y\u00fcr\u00fcme mesafeleri veya merdiven \u00e7\u0131kma gibi g\u00fcnl\u00fck aktiviteleri zor bulmakt\u0131r, \u00e7\u00fcnk\u00fc bunlar bir zamanlar iki kez d\u00fc\u015f\u00fcnmedi\u011fim \u015feylerdi. Benim i\u00e7in bir ba\u015fka zorluk da nadir g\u00f6r\u00fclen bir Musk\u00fcler Distrofi t\u00fcr\u00fcne sahip olmak, \u00e7\u00fcnk\u00fc ne olabilece\u011fine dair neredeyse hi\u00e7bir bilgi yok.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>LGMD benim i\u00e7in hala \u00e7ok yeni, \u00e7\u00fcnk\u00fc sadece 3 ay \u00f6nce te\u015fhis konuldu, hala uyum sa\u011flamaya ve LGMD ile ya\u015faman\u0131n gelece\u011fim i\u00e7in ne anlama gelece\u011fini anlamaya \u00e7al\u0131\u015f\u0131yorum. En b\u00fcy\u00fck ba\u015far\u0131m sadece nas\u0131l pozitif kalaca\u011f\u0131m\u0131 ve Musk\u00fcler Distrofiyi hayat\u0131ma nas\u0131l dahil edece\u011fimi \u00f6\u011frenmek.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? <\/strong><\/p>\n<p>Hi\u00e7bir \u015feyi hafife almamay\u0131 ve elinizdeyken sahip olduklar\u0131n\u0131z\u0131n k\u0131ymetini bilmeyi \u00f6\u011frendi\u011fime inan\u0131yorum. Pozitif kalmak \u00e7ok \u00f6nemli!<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>H\u00e2l\u00e2 eskiden oldu\u011fumuz ki\u015fi oldu\u011fumuzu fark etmenin \u00f6nemli oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. \u0130nsanlar ayr\u0131ca LGMD'li biri i\u00e7in her g\u00fcn\u00fcn ayn\u0131 olmad\u0131\u011f\u0131n\u0131, baz\u0131 g\u00fcnler di\u011ferlerinden daha iyi olaca\u011f\u0131m\u0131z\u0131 ve bir g\u00fcn yapabildi\u011fimizi ertesi g\u00fcn yapamayabilece\u011fimizi bilmelidir.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:\u00a0 Kelci \u00a0\u00a0Age: 23 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1334,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[51,67],"class_list":["post-1335","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-australia","tag-lgmd2j"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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