{"id":1638,"date":"2017-12-04T15:59:19","date_gmt":"2017-12-04T21:59:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1638"},"modified":"2017-12-04T15:59:19","modified_gmt":"2017-12-04T21:59:19","slug":"deceena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Deceena"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u0130sim<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 <\/span>Deceena<span style=\"color: #000000;\">\u00a0 \u00a0<strong>Ya\u015f<\/strong>: 31 ya\u015f\u0131nda<a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/12\/LGMD2A-Deceena-G-.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1637 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\/12\/LGMD2A-Deceena-G--300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00dclke<\/strong>: ABD<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD Alt Tipi<\/strong>:   LGMD2A - Calpainopathy olarak da bilinir<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Bana 29 ya\u015f\u0131nda te\u015fhis konuldu.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Bacaklar\u0131mdaki kas g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fc ilk belirtim oldu. Gidemiyordum <\/span>merdivenlerden yukar\u0131<span style=\"color: #000000;\"> Normal bir insan gibi, 2008 y\u0131l\u0131nda ikinci \u00e7ocu\u011fumun do\u011fumundan sonra ba\u015flad\u0131m. Doktorlar bunu sadece bebek sahibi olmama ba\u011flad\u0131 ve bana egzersiz yapmam\u0131 tavsiye etti. Hen\u00fcz 22 ya\u015f\u0131ndayd\u0131m ve daha fazlas\u0131 oldu\u011funu biliyordum. Ke\u015fke doktorlar\u0131m beni daha ciddiye alsalard\u0131. \u00c7ok say\u0131da doktora ve uzmana gittim, hepsi de \"iyi\" oldu\u011fumu s\u00f6yledi. Sonunda \"Aman Tanr\u0131m, neden kimse sana yard\u0131m etmedi?\" diyen b\u00fct\u00fcnsel temelli bir doktor buldum. Beni PT'ye g\u00f6nderdi ve son seans\u0131mda <\/span>g\u00fcn<span style=\"color: #000000;\"> PT'm bana ailemde Musk\u00fcler Distrofi hastas\u0131 olup olmad\u0131\u011f\u0131n\u0131 sordu. (Hay\u0131r). Bana \u00e7ekinik olan formlar\u0131 oldu\u011fundan bahsetti ve doktoruma MD i\u00e7in uygun testleri ve y\u00f6nlendirmeleri bulmaya ba\u015flamas\u0131n\u0131 \u00f6nerdi. Bu, bana \"Musk\u00fcler Distrofi\" kelimelerinden bahseden ilk ki\u015fiydi. Daha sonra Facebook'ta kendi videolar\u0131m\u0131 yay\u0131nlamama izin veren harika bir grup buldum. Bundan k\u0131sa bir s\u00fcre sonra, Jain Vakf\u0131 ile genetik ara\u015ft\u0131rmalara y\u00f6nlendirildim<\/span>,<span style=\"color: #000000;\"> ve Dr. Jerry Mendel'i g\u00f6rebildim ve bu da LGMD2A'n\u0131n kesin te\u015fhisi ile sonu\u00e7land\u0131. Yeni sa\u011flay\u0131c\u0131m\u0131n s\u00fcreci<\/span>,<span style=\"color: #000000;\"> Genetik teste kadar, te\u015fhis konulmas\u0131, bana YILLARCA \"iyi\" oldu\u011fum ve egzersiz yapmam gerekti\u011fi s\u00f6ylendikten sonra yakla\u015f\u0131k 3 AY s\u00fcrd\u00fc. Te\u015fhisimi ald\u0131m <\/span>\u00fczerinde<span style=\"color: #000000;\"> en k\u00fc\u00e7\u00fck k\u0131z\u0131m 1<sup>st<\/sup> Do\u011fum g\u00fcn\u00fc. Her zaman hat\u0131rlayaca\u011f\u0131m bir g\u00fcn....<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Ailemde ba\u015fka kimsede LGMD yok.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u015eu anda en b\u00fcy\u00fck zorlu\u011fum \u00e7ocuklar\u0131ma belirli aktiviteleri yapamad\u0131\u011f\u0131m\u0131, onlarla ko\u015fup oynayamad\u0131\u011f\u0131m\u0131, hatta onlar\u0131 s\u0131raya dizemedi\u011fimi a\u00e7\u0131klamak ve bunun nedenini anlatmak. Bazen onlar\u0131n sorular\u0131na cevap vermek \u00e7ok zor oluyor. \u0130kinci en b\u00fcy\u00fck zorluk ise insanlar\u0131n engelli park yerini engelli olanlara ay\u0131rmam gerekti\u011fi konusunda kaba yorumlar yapmas\u0131. \"Normal\" bir insan gibi g\u00f6r\u00fcnebilirim, ancak uzun mesafeleri y\u00fcr\u00fcmekte zorluk \u00e7ekiyorum ve art\u0131k kocam\u0131n yard\u0131m\u0131 olmadan merdivenlerden veya kald\u0131r\u0131mdan \u00e7\u0131kam\u0131yorum.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">En b\u00fcy\u00fck ba\u015far\u0131m\u0131n herkes i\u00e7in sevgi ve \u015fefkati \u00f6\u011frenmek oldu\u011funu s\u00f6yleyebilirim. Engelli insanlar\u0131n kar\u015f\u0131la\u015ft\u0131\u011f\u0131 duygusal zorluklar\u0131n hi\u00e7 fark\u0131na varmam\u0131\u015ft\u0131m. \u00c7o\u011fu ki\u015fi bunun sadece fiziksel oldu\u011funu d\u00fc\u015f\u00fcn\u00fcr ama \u00f6yle de\u011fil. Yan\u0131mda durmay\u0131 se\u00e7en ve 9 g\u00fcn sonra hala benimle evlenen bir e\u015f buldum. Bu korkun\u00e7 hastal\u0131kla fiziksel, duygusal ve zihinsel olarak kar\u015f\u0131 kar\u015f\u0131ya kalaca\u011f\u0131m\u0131z zorluklar\u0131 bilerek devam edip etmememiz konusunda \u00e7ok samimi ve zor (benim i\u00e7in) bir konu\u015fma yapt\u0131k. \u0130lerleyici bir n\u00f6rolojik hastal\u0131\u011f\u0131m oldu\u011funu bilerek \u00e7ekip gidebilirdi, ancak o ko\u015fulsuz seviyor ve bana ko\u015fulsuz sevgi ve kabullenmenin ger\u00e7ek anlam\u0131n\u0131 \u00f6\u011fretti. Bana her durumda, hatta korkun\u00e7 oldu\u011funu d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm\u00fcz durumlarda bile daha derin ve her zaman sevmeyi \u00f6\u011fretti. En b\u00fcy\u00fck ba\u015far\u0131m olan g\u00fczel bir aile kurduk. Umar\u0131m \u00e7ocuklar\u0131m\u0131z\u0131n g\u00f6rmesi ve umar\u0131m ya\u015famas\u0131 i\u00e7in sevgi ve \u015fefkatle \u00f6rnek olmaya devam edebiliriz. Bu d\u00fcnya \u00e7ok daha g\u00fczel bir yer olurdu. <\/span>o<span style=\"color: #000000;\"> \u0130nsanlara engelli gibi de\u011fil, insan gibi davran\u0131rlard\u0131.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">LGMD'ye sahip olmak bana nas\u0131l savunuculuk yapaca\u011f\u0131m\u0131 ve nas\u0131l konu\u015faca\u011f\u0131m\u0131 \u00f6\u011fretti. Y\u0131llarca doktorlara YANLI\u015e olduklar\u0131n\u0131 s\u00f6yleyerek kendimi savunmak zorunda kald\u0131m. Bunu kim yap\u0131yor? \u0130\u015fte bu k\u0131z! Bu durum bana, art\u0131k kendi sesim olmam i\u00e7in ilham verdi. <\/span>i\u00e7in<span style=\"color: #000000;\"> Di\u011ferleri. Bunu yapamayanlar i\u00e7in t\u00fcm kalbimle savunuyorum.<\/span>,<span style=\"color: #000000;\"> ya da yard\u0131ma ihtiyac\u0131 olanlar i\u00e7in. Engelli olmay\u0131 bir arma\u011fan olarak g\u00f6r\u00fcyorum. Bana bug\u00fcn sahip oldu\u011fum inan\u00e7lar\u0131 tan\u0131mlamama ve \u015fekillendirmeme yard\u0131mc\u0131 olan f\u0131rsatlar verildi. Rahats\u0131z edici oldu\u011funda ve kimse istemedi\u011finde bile her zaman sesimi y\u00fckseltece\u011fim. Doktorlar\u0131m\u0131 her zaman sorgulayaca\u011f\u0131m ve durmayaca\u011f\u0131m. LGMD'ye sahip olmak beni bug\u00fcn sahip oldu\u011fum azim ve kararl\u0131l\u0131kla bu sert insana d\u00f6n\u00fc\u015ft\u00fcrd\u00fc.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Bu soruya nereden ba\u015flayaca\u011f\u0131m\u0131 bile bilmiyorum. Temel olarak, LGMD'li olanlar olmayanlardan farkl\u0131 DE\u011e\u0130L. Hala nefes al\u0131yorum ve hala duygular\u0131m var. Hala ayn\u0131 \u015fekilde seviyorum ve hala ayn\u0131 \u015fekilde ac\u0131 \u00e7ekiyorum. Mutlu olmak ve MD olmayanlarla ayn\u0131 f\u0131rsatlara sahip olmak istiyorum. \u0130nsanlar\u0131n insanlara nas\u0131l davrand\u0131\u011f\u0131n\u0131n biraz daha fark\u0131nda olmam d\u0131\u015f\u0131nda bir fark\u0131m yok.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Yapaca\u011f\u0131m ilk \u015fey \u00e7ocuklar\u0131ma ko\u015fmak, sonra onlarla yerde g\u00fcre\u015fmek ve onlarla birlikte z\u0131play\u0131p onlar\u0131 havaya f\u0131rlatmak olurdu. Bunu kelimelerle ifade edemeyece\u011fim kadar \u00e7ok \u00f6zl\u00fcyorum. Bunu neredeyse 12 ve 9 ya\u015f\u0131nda olan b\u00fcy\u00fck \u00e7ocuklar\u0131mla yapabildim<\/span>,<span style=\"color: #000000;\"> Ama 6 ve neredeyse 3 ya\u015f\u0131nda olan k\u00fc\u00e7\u00fck ikisiyle bunu yapamad\u0131m. Ondan sonra kocam\u0131n kollar\u0131na atlard\u0131m ve bir s\u00fcre orada kal\u0131rd\u0131m. Sonra ko\u015fuya \u00e7\u0131kmam gerekirdi, uzun bir ko\u015fuya. Ko\u015fmak benim tercih etti\u011fim bir aktiviteydi ve bunu uzun y\u0131llard\u0131r yapam\u0131yordum.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* * * 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<\/span>:<span style=\"color: #000000;\"> <a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">* * * LGMD konusunda fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN!<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Deceena\u00a0 \u00a0Age: 31 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1637,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1638","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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