{"id":1176,"date":"2016-04-08T12:01:28","date_gmt":"2016-04-08T17:01:28","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1176"},"modified":"2016-04-08T12:01:28","modified_gmt":"2016-04-08T17:01:28","slug":"mary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/04\/08\/mary\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Mary"},"content":{"rendered":"<p>04\/08\/2016 - LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n<p><strong>\u0130S\u0130M<\/strong>:  Mary\u00a0\u00a0 <strong>Ya\u015f<\/strong>: 46<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/04\/LGMD2A-Mary-BG.png\" rel=\"attachment wp-att-1177\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1177 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\/04\/LGMD2A-Mary-BG-300x169.png\" alt=\"LGMD2A - Mary BG\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dcLKE<\/strong>: Birle\u015fik Devletler<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 25 ya\u015f\u0131ndayken LGMD te\u015fhisi kondu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>\u0130lk belirtilerim, destek i\u00e7in kollar\u0131ma a\u011f\u0131rl\u0131k vermeden oturur pozisyondan kalkamamak ve merdiven \u00e7\u0131kmakta zorlanmakt\u0131.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>Hay\u0131r, LGMD te\u015fhisi konulan tek aile \u00fcyesi benim.<\/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>Benim i\u00e7in en b\u00fcy\u00fck zorluk g\u00fcnl\u00fck aktivitelerde ba\u011f\u0131ms\u0131z kalmaya \u00e7al\u0131\u015fmak.  Hastal\u0131\u011f\u0131n ilerlemesi yava\u015f ama bir zamanlar yapabildi\u011finiz \u015feyleri yapamamak al\u0131\u015fmas\u0131 zor bir durum.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>En b\u00fcy\u00fck ba\u015far\u0131m kocamla evlenmekti. 2014'te dul kald\u0131m.  O benim en b\u00fcy\u00fck destek\u00e7ilerimden biriydi.  Olabilece\u011fim en iyi insan olmam i\u00e7in bana ilham verdi.  Ailem ve arkada\u015flar\u0131m beni cesaretlendiriyor ve bana b\u00fcy\u00fck destek oluyorlar.<\/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 alm\u0131yorum.  Her g\u00fcn bir hediye - baz\u0131lar\u0131 di\u011ferlerinden daha iyi.  Hareket kabiliyetim k\u0131s\u0131tland\u0131\u011f\u0131nda daha d\u0131\u015fa d\u00f6n\u00fck oldum \u00e7\u00fcnk\u00fc te\u015fhisime ra\u011fmen hala hayat\u0131 deneyimlemek ve aktif olmak istiyorum.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>LGMD bir kas erimesi hastal\u0131\u011f\u0131d\u0131r.<\/p>\n<p>Yard\u0131m edebilece\u011finiz ki\u015filere yard\u0131m edin, e\u011fitimli olun ve herkese sayg\u0131l\u0131 davran\u0131n.<\/p>\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n<p>E\u011fer yar\u0131n bir tedavi bulunsayd\u0131, ko\u015far, dans eder ve z\u0131plard\u0131m!  Art\u0131k fiziksel olarak yapamad\u0131\u011f\u0131m her \u015fey en \u00f6ncelikli konular\u0131m olurdu!<\/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>04\/08\/2016 &#8211;\u00a0LGMD \u201cSpotlight Interview\u201d NAME:\u00a0 Mary\u00a0\u00a0 Age: 46 COUNTRY: United [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1177,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-1176","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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