{"id":1594,"date":"2017-09-30T10:40:17","date_gmt":"2017-09-30T15:40:17","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1594"},"modified":"2017-09-30T10:40:17","modified_gmt":"2017-09-30T15:40:17","slug":"kourtney","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/09\/30\/kourtney\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Kourtney"},"content":{"rendered":"<p><strong>LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/p>\n<p><strong>\u0130sim<\/strong>:  Kourtney\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <strong>Ya\u015f<\/strong>: 23 yrs. old <a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2B-Kourtney-N.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1593 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\/LGMD2B-Kourtney-N-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>: ABD<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:    LGMD2B \/ Miyoshi Miyopatisi<!--more--><\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 14 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>Fark etti\u011fim ilk belirti, b\u00fcy\u00fck bir dans g\u00f6sterisinden sonra bald\u0131r kaslar\u0131m\u0131n kontrols\u00fcz bir \u015fekilde \u015fi\u015fmeye ba\u015flamas\u0131yd\u0131. Bir s\u00fcre sonra ayak bileklerimi g\u00f6remez oldum ve endi\u015felenmeye ba\u015flad\u0131k. Doktor bize bald\u0131rlar\u0131m\u0131 her g\u00fcn \u00f6l\u00e7memizi ve bir kay\u0131t tutmam\u0131z\u0131 s\u00f6yledi. Gittik\u00e7e b\u00fcy\u00fcmeye devam ediyorlard\u0131. Doktorlar bunun bir kan p\u0131ht\u0131s\u0131 y\u00fcz\u00fcnden olabilece\u011fini d\u00fc\u015f\u00fcnd\u00fcler ve bir sorun olup olmad\u0131\u011f\u0131n\u0131 g\u00f6rmek i\u00e7in bacaklar\u0131ma, kalbime ve mideme bir s\u00fcr\u00fc ultrason yapt\u0131lar. Yanl\u0131\u015f bir \u015fey bulamad\u0131lar. Daha sonra kan testi yapt\u0131rd\u0131m ve CK seviyelerimin y\u00fcksek oldu\u011funu g\u00f6rd\u00fcler, bu y\u00fczden kas biyopsisi yapmaya karar verdiler ve bana bu \u015fekilde te\u015fhis koydular.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/p>\n<p>Evet. Ablam Stephanie Garrett'ta da benimle ayn\u0131 tip var. Ona benden sadece birka\u00e7 ay \u00f6nce te\u015fhis konmu\u015f. Onun kollar\u0131nda (2B), benim ise bacaklar\u0131mda (MM) daha fazla sorun var gibi g\u00f6r\u00fcn\u00fcyor.<\/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>Bence MD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011fu, eskiden yapabildi\u011finiz bir \u015feyi yapamayaca\u011f\u0131n\u0131z fikriyle ba\u015fa \u00e7\u0131kmak. Dans etmek, t\u0131rmanmak, y\u00fcr\u00fcmek gibi fiziksel olarak yap\u0131lmas\u0131 zor olan ve eskiden gayet iyi yapabildi\u011fim pek \u00e7ok \u015fey var. \u0130\u015fin zor k\u0131sm\u0131 bununla bar\u0131\u015f\u0131k olmak. Bence MD, fiziksel olarak zorlay\u0131c\u0131 olmaktan \u00e7ok duygusal olarak zorlay\u0131c\u0131. Ancak, sadece pozitif kalmal\u0131 ve hala yapabilece\u011finiz t\u00fcm harika \u015feyleri d\u00fc\u015f\u00fcnmelisiniz.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>Bu zor bir soru \u00e7\u00fcnk\u00fc hayat\u0131mda \u00e7ok \u015fey ba\u015fard\u0131\u011f\u0131m\u0131 hissediyorum. \u00d6nce liseden sonra \u00fcniversiteden mezun oldum, \u00e7ok sevdi\u011fim iki i\u015fim var, lisedeki sevgilimle evlendim ama en \u00f6nemlisi anne oldum. K\u00fc\u00e7\u00fckl\u00fc\u011f\u00fcmden beri anne olmay\u0131 hep d\u00f6rt g\u00f6zle bekledim. Bana LGMD te\u015fhisi konuldu\u011funda bunun m\u00fcmk\u00fcn olup olmad\u0131\u011f\u0131n\u0131 bilmiyordum. Ya\u015f\u0131m ilerledik\u00e7e ve v\u00fccudum zay\u0131flamaya ba\u015flad\u0131k\u00e7a baz\u0131 \u015feyleri sorgulad\u0131m. Fiziksel durumum nedeniyle aileme ne gibi zararlar verebilece\u011fime dair pek \u00e7ok korkum vard\u0131. Ancak, arkada\u015flar\u0131m ve ailem destekleyici, sevgi dolu ve yard\u0131mc\u0131 olmaktan ba\u015fka bir \u015fey yapmad\u0131lar.  En b\u00fcy\u00fck ba\u015far\u0131m k\u00fc\u00e7\u00fck k\u0131z\u0131m. Onun mutlu, sa\u011fl\u0131kl\u0131 ve g\u00fcvende olmas\u0131 i\u00e7in i\u015fleri yoluna koyman\u0131n pek \u00e7ok yolunu buldum. Gelece\u011fin \u00e7ocuklarla zor olaca\u011f\u0131n\u0131 biliyorum ama buna fazlas\u0131yla de\u011fecek.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? <\/strong><\/p>\n<p>LGMD beni kesinlikle fiziksel olarak zay\u0131flatm\u0131\u015f olsa da, daha da \u00f6nemlisi duygusal ve ruhsal olarak g\u00fc\u00e7lendirdi. Kimsenin bu hastal\u0131\u011fa sahip olmas\u0131n\u0131 asla istemem, ancak bunun hayat\u0131mda bir l\u00fctuf oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Bu hastal\u0131\u011fa sahip oldu\u011fum, ba\u015fkalar\u0131na bu konuda bir \u015feyler \u00f6\u011fretebildi\u011fim ve ba\u015fkalar\u0131n\u0131 etkileyip onlara \u00f6rnek olabildi\u011fim i\u00e7in minnettar\u0131m.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>D\u00fcnyan\u0131n bizim normal insanlar oldu\u011fumuzu, duygular\u0131m\u0131z oldu\u011funu ve yaparken ya da s\u00f6ylerken dikkatli olman\u0131z gereken \u015feyler oldu\u011funu bilmesini istiyorum. L\u00fctfen bakmay\u0131n, l\u00fctfen bana komik y\u00fcr\u00fcd\u00fc\u011f\u00fcm\u00fc s\u00f6ylemeyin, l\u00fctfen d\u00fc\u015fersem g\u00fclmeyin ve l\u00fctfen beni yapabildi\u011fim ve yapamad\u0131\u011f\u0131m \u015feylere g\u00f6re yarg\u0131lamay\u0131n. L\u00fctfen engelli \u015fakalar\u0131 yapmay\u0131n. L\u00fctfen bir \u015feyi yapabilece\u011fimi varsaymay\u0131n. Bunun yerine, l\u00fctfen bana yard\u0131m edin, beni kald\u0131r\u0131n ve cesaretlendirin. L\u00fctfen bana sevildi\u011fimi ve \u00f6nemli oldu\u011fumu hissettirin. Ve l\u00fctfen beni fiziksel olarak iyiymi\u015fim gibi sevin.<\/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\u015febilseydim, yapaca\u011f\u0131m ilk \u015fey dans etmek olurdu. Dans benim kalbim, ruhum ve tutkumdu ve onu her \u015feyden \u00e7ok \u00f6zl\u00fcyorum.<\/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 Kourtney\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Age: 23 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1593,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[88],"class_list":["post-1594","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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