{"id":1252,"date":"2016-06-24T14:08:02","date_gmt":"2016-06-24T19:08:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1252"},"modified":"2016-06-24T14:08:02","modified_gmt":"2016-06-24T19:08:02","slug":"donna-marie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/06\/24\/donna-marie\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Donna-Marie"},"content":{"rendered":"<p>06\/24\/2016<\/p>\n<p>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n<p><strong>\u0130sim<\/strong>:  Donna-Marie \u00a0 \u00a0 \u00a0<strong>Ya\u015f<\/strong>: 32 ya\u015f\u0131nda<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/06\/LGMD2i-Donna-Marie.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1251 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\/06\/LGMD2i-Donna-Marie-300x169.png\" alt=\"LGMD2i - Donna-Marie\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>: Birle\u015fik Krall\u0131k<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>: LGMD2i<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Testlere 12 ya\u015f\u0131nda ba\u015flad\u0131m, 13 ya\u015f\u0131nda Musk\u00fcler Distrofi tan\u0131s\u0131 ald\u0131m ve birka\u00e7 y\u0131l sonra da alt tipini \u00f6\u011frendim.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>Beden e\u011fitimi derslerinde genellikle di\u011fer \u00e7ocuklardan daha yava\u015ft\u0131m. \u00d6\u011fretmenlerim ayak uyduramad\u0131\u011f\u0131m\u0131 fark ettiler ama elimden gelenin en iyisini yapmam gerekti\u011fini biliyorlard\u0131!<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>Hay\u0131r, ben 100% e\u015fsizim J<\/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 bunun beni zihinsel olarak nas\u0131l etkiledi\u011fi; LGMD konusunda \u015fansl\u0131 oldu\u011fumu ve \u00e7ok daha b\u00fcy\u00fck sorunlar\u0131m olabilece\u011fini biliyorum, bu y\u00fczden bu konuda \u00e7ok fazla \u015fikayet etmemeye \u00e7al\u0131\u015f\u0131yorum ama birka\u00e7 y\u0131l\u0131m\u0131 bana ve topall\u0131\u011f\u0131ma bakan insanlardan saklanmak isteyerek ge\u00e7irdim. D\u00f6rt y\u0131ll\u0131k erkek arkada\u015f\u0131m engelime kar\u015f\u0131 tutumumu hayal edebilece\u011fimden \u00e7ok daha fazla de\u011fi\u015ftirdi ve art\u0131k insanlar\u0131n bana bakmas\u0131n\u0131 umursamasam da, bazen d\u0131\u015far\u0131 \u00e7\u0131kt\u0131\u011f\u0131m\u0131zda insanlar bize bakt\u0131\u011f\u0131nda onun ad\u0131na utand\u0131\u011f\u0131m ve onun ya\u015f\u0131nda \"normal\" biriyle birlikte olmas\u0131 gerekti\u011fini d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm i\u00e7in zorlan\u0131yorum.<\/p>\n<p>Ayr\u0131ca bir tart\u0131\u015fma s\u0131ras\u0131nda, \u00f6zellikle de al\u00e7ak bir sandalyede oturuyorsam, f\u0131rlay\u0131p gidememekten de nefret ediyorum, ha ha!<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>En b\u00fcy\u00fck ba\u015far\u0131m\u0131n kariyerimle ilgili oldu\u011funu s\u00f6ylemek isterdim ama bu konuda \u00f6v\u00fcnecek pek bir \u015feyim olmad\u0131\u011f\u0131n\u0131 s\u00f6ylemeliyim. Ancak devam etmeyi ve pozitif kalmay\u0131 ba\u015farmam\u0131 bir ba\u015far\u0131 olarak g\u00f6r\u00fcyorum. M\u00fctevaz\u0131 bir kariyerim var ama yine de \u00e7al\u0131\u015f\u0131yorum ve sosyalle\u015fiyorum.  Art\u0131k Quasimodo gibi hissederek saklanmaya \u00e7al\u0131\u015fm\u0131yorum!<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>LGMD hayat\u0131mda sahip oldu\u011fum harika insanlar i\u00e7in minnettar olmam\u0131 sa\u011flad\u0131. Daha iyi bir aile, e\u015f veya arkada\u015f dileyemezdim.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p><strong>T\u00fcm d\u00fcnyan\u0131n LGMD'nin beynimi ya da g\u00f6zlerimi etkilemedi\u011fini bilmesini istiyorum!<\/strong><\/p>\n<p><strong>Benimle bir \u00e7ocuk gibi konu\u015fulmas\u0131na ihtiyac\u0131m yok ve d\u00fcrtmeleri, f\u0131s\u0131lt\u0131lar\u0131 ve bak\u0131\u015flar\u0131 g\u00f6rebiliyorum. <\/strong><\/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>Burada s\u0131ralayabilece\u011fim pek \u00e7ok \u015fey var ama ger\u00e7ek \u015fu ki, san\u0131r\u0131m yapaca\u011f\u0131m ilk \u015fey d\u0131\u015far\u0131 \u00e7\u0131kmak ve kald\u0131rabilece\u011fim kadar \u00e7ok i\u00e7kiyle kutlama yapmak ve d\u00fc\u015fersem yerde kal\u0131r\u0131m diye endi\u015felenmemek olurdu! Ve belki birka\u00e7 barda dans etmek J<\/p>\n<p>Ancak bu olduk\u00e7a sa\u00e7ma bir cevap oldu\u011fu i\u00e7in, daha sonra erkek arkada\u015f\u0131m ve ailemle g\u00fczel bir tatile \u00e7\u0131kaca\u011f\u0131m\u0131 ve hi\u00e7birinin zeminin \u00e7ok engebeli olup olmad\u0131\u011f\u0131 veya herhangi bir basamak olup olmad\u0131\u011f\u0131 veya sahilde y\u00fcr\u00fcyemeyece\u011fim veya bir havuza girip \u00e7\u0131kamayaca\u011f\u0131m veya bir sandalyeden kalkamayaca\u011f\u0131m konusunda endi\u015felenmelerine gerek olmad\u0131\u011f\u0131n\u0131 eklemek isterim.<\/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>06\/24\/2016 LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Donna-Marie \u00a0 \u00a0 \u00a0Age: 32 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1251,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1252","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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