{"id":3558,"date":"2020-09-04T10:02:29","date_gmt":"2020-09-04T15:02:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3558"},"modified":"2024-02-09T14:24:33","modified_gmt":"2024-02-09T14:24:33","slug":"tatyana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/09\/04\/tatyana\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Tatyana"},"content":{"rendered":"<p><strong>LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"&nbsp;<\/strong><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/09\/LGMD2A-Tatyana-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3559\"\/><\/figure><\/div>\n\n\n\n<p><strong>\u0130sim<\/strong>:  Tatyana&nbsp;&nbsp;      <strong>Ya\u015f<\/strong>: 33 ya\u015f\u0131nda<\/p>\n\n\n\n<p><strong>\u00dclke<\/strong>: Rusya<\/p>\n\n\n\n<p><strong>LGMD Alt Tipi<\/strong>:  LGMD 2A \/ R1 Calpain3 ile ili\u015fkili<\/p>\n\n\n\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n\n\n\n<p>Bana 14-15 ya\u015flar\u0131nda LGMD'nin bilinmeyen bir alt tipi te\u015fhisi kondu. 27 ya da 28 ya\u015f\u0131mdayken te\u015fhisim genetik olarak do\u011fruland\u0131.<\/p>\n\n\n\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n\n\n\n<p>\u0130lk belirtilerim ko\u015fmakta, merdiven \u00e7\u0131kmakta zorlanmam ve asla barfiks \u00e7ekemememdi.<\/p>\n\n\n\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n\n\n\n<p>Hay\u0131r, ailemde LGMD'li olan tek ki\u015fi benim.<\/p>\n\n\n\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\n\n\n<p>Kabullenmek fiziksel engellilikten bile \u00e7ok daha zordu. Nadirsiniz, farkl\u0131s\u0131n\u0131z. Herhangi bir sosyal gruba ait de\u011filsiniz. Kendi deneyimlerini payla\u015fabilecek ve size yard\u0131mc\u0131 olabilecek kimseniz yok. \u0130nternet sayesinde farkl\u0131 t\u00fcrlerde kas distrofisi olan ve bunun nas\u0131l bir his oldu\u011funu bilen insanlarla tan\u0131\u015ft\u0131m. \u015eimdi destek bulabilece\u011fim bir toplulu\u011fun par\u00e7as\u0131 olman\u0131n \u00f6nemini anl\u0131yorum.<\/p>\n\n\n\n<p>\u0130kinci zorluk ise eri\u015filebilirlik eksikli\u011fi. Her ad\u0131m\u0131m\u0131, her rotam\u0131 planlamak zorunday\u0131m.<\/p>\n\n\n\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n\n\n\n<p>Bilmiyorum J Hayat\u0131m olduk\u00e7a s\u0131radan: \u00c7al\u0131\u015f\u0131yorum, yeni \u015feyler \u00f6\u011freniyorum. Ailemi ve arkada\u015flar\u0131m\u0131 seviyorum. Kendim i\u00e7in en b\u00fcy\u00fck ba\u015far\u0131m\u0131n, ilerleyen g\u00fc\u00e7 kayb\u0131 nedeniyle ba\u011f\u0131ml\u0131 olma korkumun \u00fcstesinden gelmek oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Art\u0131k bu beni korkutmuyor. \u015eimdi sadece LGMD ile hayat\u0131m\u0131 nas\u0131l daha kolay hale getirebilece\u011fimin yollar\u0131n\u0131 ar\u0131yorum.<\/p>\n\n\n\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n\n\n\n<p>Beni k\u00f6kten de\u011fi\u015ftirdi. Daha fazla empati kuruyorum, daha ho\u015fg\u00f6r\u00fcl\u00fcy\u00fcm. Genellikle hafife al\u0131nan \u015feylere de\u011fer veriyorum.<\/p>\n\n\n\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n\n\n\n<p>D\u00fcnyan\u0131n LGMD'nin ilerleyici bir hastal\u0131k oldu\u011funu ve buna al\u0131\u015fman\u0131n zaman ald\u0131\u011f\u0131n\u0131 bilmesini istiyorum. Ve d\u00fcnyan\u0131n LGMD ile ya\u015fam\u0131n di\u011fer ya\u015famlar gibi mutluluk dolu olabilece\u011fini bilmesini istiyorum.<\/p>\n\n\n\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n\n\n\n<p>Vals dans\u0131 yapard\u0131m! Ve ayr\u0131ca ko\u015fard\u0131m! Her ikisi de - r\u00fczgar\u0131 hissetmek i\u00e7in olabildi\u011fince h\u0131zl\u0131!<\/p>\n\n\n\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\/\">http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d&nbsp; Name:&nbsp; Tatyana&nbsp;&nbsp; Age: 33 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-3558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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