{"id":1560,"date":"2017-09-04T13:37:06","date_gmt":"2017-09-04T18:37:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1560"},"modified":"2017-09-04T13:37:06","modified_gmt":"2017-09-04T18:37:06","slug":"felix","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/09\/04\/felix\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Felix"},"content":{"rendered":"<p><strong>LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/p>\n<p><strong>\u0130sim<\/strong>:  Felix\u00a0 <strong>Ya\u015f<\/strong>:  35 ya\u015f\u0131nda<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2A-Felix.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1559 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\/2017\/09\/LGMD2A-Felix-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>:  Brezilya<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 11 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>\u0130lk belirtilerim aras\u0131nda d\u00fc\u015fmeler, yorgunluk, ayak parmaklar\u0131m\u0131n ucunda y\u00fcr\u00fcmek vard\u0131.  Ayr\u0131ca, fiziksel aktivitelerde benim ya\u015f\u0131mdaki di\u011fer insanlara ayak uyduram\u0131yordum.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>Evet, LGMD2A hastas\u0131 bir k\u0131z karde\u015fim 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>En b\u00fcy\u00fck zorluk, v\u00fccudumdaki de\u011fi\u015fikliklere uyum sa\u011flamak, olas\u0131 d\u00fc\u015fmelere kar\u015f\u0131 savunma bi\u00e7imleri geli\u015ftirmek, merdiven inip \u00e7\u0131karken taktikler geli\u015ftirmek, baz\u0131 engellere hafif\u00e7e basmamaya \u00f6zen g\u00f6stermek ve \u00f6zellikle sandalyeden ve yerden kalkarken destek i\u00e7in her zaman bir sandalye aramak zorunda kalmakt\u0131.   Beni d\u00fc\u015f\u00fcrebilecek her \u015feye kar\u015f\u0131 her zaman dikkatli olmaya \u00e7al\u0131\u015f\u0131yorum.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>Gitar \u00e7almay\u0131 \u00f6\u011frendim!  Bu b\u00fcy\u00fck bir zorluktu \u00e7\u00fcnk\u00fc \u00f6zellikle enstr\u00fcman\u0131 tutarken ve gitar\u0131n tellerini \u00e7almak i\u00e7in kollar\u0131mla hareket ederken \u00e7ok zorlan\u0131yordum.  Bu \u00e7ok yorucu olabiliyor ama yine de yapabiliyorum.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>LGMD ile ya\u015famak bana m\u00fccadele etmeyi ve hayata daha fazla de\u011fer vermeyi \u00f6\u011fretti ve bug\u00fcn de \u00f6\u011fretiyor.  B\u00f6ylesine zor bir d\u00fcnyada hayatta kalmak \u00e7ok \u00e7aba gerektiriyor ve \u00f6zellikle ba\u015fkalar\u0131yla u\u011fra\u015f\u0131rken beni daha iyi bir insan yap\u0131yor.  \u0130\u00e7inde ya\u015fad\u0131\u011f\u0131m\u0131z \u00f6yle durumlar var ki, bunlar\u0131 ancak ayn\u0131 m\u00fccadeleyi payla\u015fanlar bilebilir ve anlayabilir.  Bu d\u00fcnyadaki t\u00fcm ya\u015famlarda Tanr\u0131'n\u0131n bir amac\u0131 var.  San\u0131r\u0131m LGMD bana hayatta sahip olabilece\u011fim en b\u00fcy\u00fck meydan okuma hissini vermi\u015f olabilir.  Bizler rakibiz ve her iyi m\u00fccadele gibi ben de sonuna kadar m\u00fccadele etmeye niyetliyim - tabii ki kazanmaya!<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>\u0130nsanlar bu hastal\u0131kla ya\u015fad\u0131\u011f\u0131 i\u00e7in d\u00fcnyan\u0131n LGMD hakk\u0131nda bilgi sahibi olmas\u0131 gerekiyor.  Bu hastal\u0131\u011fa nas\u0131l yard\u0131m edilebilece\u011finin fark\u0131nda olmak \u00f6nemlidir.  Bunu bilmek bizi fiziksel k\u0131s\u0131tl\u0131l\u0131klar\u0131 olan di\u011fer insanlardan daha iyi ya da daha k\u00f6t\u00fc yapmaz.  Ve umar\u0131m, yak\u0131n gelecekte, d\u00fcnya t\u00fcm haberlerin en b\u00fcy\u00fc\u011f\u00fcn\u00fc \u00f6\u011frenecek - - bu hastal\u0131k i\u00e7in bir tedavi oldu\u011funu!<\/p>\n<p><strong>\u00a0<\/strong><\/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 iyile\u015fmi\u015f olsayd\u0131m, Tanr\u0131'n\u0131n ad\u0131n\u0131 y\u00fcceltecektim. Futbol oynamak, merdiven \u00e7\u0131kmak ve kimsenin yard\u0131m\u0131 olmadan oturup kalkmak gibi \u015feyler yapard\u0131m.  \u00c7o\u011fu insan\u0131n pek dikkat etmedi\u011fi bu basit g\u00fcnl\u00fck faaliyetler, tekerlekli sandalyedeki bizler i\u00e7in hayaldir.  Bir tedavi, tarih kitaplar\u0131nda okunacak destans\u0131 bir zafer olacakt\u0131r.<\/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 <a href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Felix\u00a0 Age:\u00a0 35 yrs. old Country:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[81,82],"class_list":["post-1560","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-brazil","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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