{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Natasha"},"content":{"rendered":"<figure class=\"wp-block-image 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\/01\/LGMD1D-Natasha-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3179\"\/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/h3>\n\n\n\n<p><strong>\u0130sim<\/strong>:  Natasha&nbsp;\n<strong>Ya\u015f<\/strong>:\n25 ya\u015f\u0131nda<\/p>\n\n\n\n<p><strong>\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n\n\n\n<p><strong>LGMD Alt Tipi<\/strong>:   LGMD D1 DNAJB6 ile ili\u015fkili (Eskiden LGMD tipi\n1D)<\/p>\n\n\n\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n\n\n\n<p>Bana 23 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n\n\n\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n\n\n\n<p>Alt tipimiz ge\u00e7 ba\u015flang\u0131\u00e7l\u0131, bu nedenle \u015fu anda hi\u00e7bir semptomum yok, ancak b\u00fcy\u00fcrken te\u015fhisimi bildi\u011fim i\u00e7in \u015fimdi daha anlaml\u0131 olan k\u00fc\u00e7\u00fck \u015feyler vard\u0131.  B\u00fcy\u00fcrken ya\u015f\u0131tlar\u0131m kadar h\u0131zl\u0131 ko\u015famazd\u0131m ve \u00f6rne\u011fin dans ederken ellerimi kullanmadan yerden kalkmakta zorlan\u0131rd\u0131m.<\/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>Evet, babam, amcam (ailemin baba taraf\u0131ndan) ve babam\u0131n babas\u0131\nDedelerin hepsine ayn\u0131 te\u015fhis konmu\u015f.<\/p>\n\n\n\n<p><strong>En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong>:<\/p>\n\n\n\n<p>Benim i\u00e7in en b\u00fcy\u00fck zorluk, bir g\u00fcn\nhareket kabiliyetim \u015fimdikinden daha az olacak ve belki de devam edemeyece\u011fim\n\u015eu anda s\u00fcrd\u00fcrmek istedi\u011fim aktif ya\u015fam tarz\u0131na \u00f6nc\u00fcl\u00fck etmek.<\/p>\n\n\n\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n\n\n\n<p>En b\u00fcy\u00fck ba\u015far\u0131mdan emin de\u011filim... S\u00fcrd\u00fcrd\u00fc\u011f\u00fcm aile ve arkada\u015fl\u0131k ba\u011flar\u0131n\u0131 s\u00f6ylemeliyim.  Ayr\u0131ca, misyonu Limb Girdle Muscular Dystrophy tip 1D (LGMD1D) te\u015fhisi konmu\u015f bireylerin bir araya gelmesi, ilgili haberleri birle\u015ftirmesi ve ara\u015ft\u0131rmalar\u0131 ilerletmek i\u00e7in ba\u011f\u0131\u015f toplama \u00e7abalar\u0131n\u0131 ba\u015flatmas\u0131 i\u00e7in merkezi bir konum sa\u011flamak olan kar amac\u0131 g\u00fctmeyen bir kamu vakf\u0131 olan LGMD-1D DNAJB6 Vakf\u0131 arac\u0131l\u0131\u011f\u0131yla LGMD'nin bask\u0131n formlar\u0131 i\u00e7in olu\u015fturdu\u011fumuz ve olu\u015fturmakta oldu\u011fumuz topluluk.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a> &nbsp;Ayr\u0131ca, LGMD'nin otozomal dominant formu tan\u0131s\u0131 konan t\u00fcm hastalar i\u00e7in bir Hasta Kayd\u0131 olu\u015fturduk.&nbsp; <\/p>\n\n\n\n<p><strong>LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n<p>Kendimi her zaman gelece\u011fi d\u00fc\u015f\u00fcn\u00fcrken buluyorum, eylemlerimin nas\u0131l\n\u015fimdi bedenimi, sevdi\u011fim insanlar\u0131 ve yeti\u015ftirmeyi umdu\u011fum ailemi etkileyecek.  Bu durum beni sabr\u0131m\u0131 art\u0131rmaya ve\nfiziksel olarak daha az yo\u011fun bir ya\u015fam tarz\u0131 s\u00fcr\u00fcn.<\/p>\n\n\n\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n\n\n\n<p>Devam etmeliyiz\nyaymak ve tedaviye yard\u0131mc\u0131 olacak \u015fekilde ba\u011flant\u0131 kurmak.  \u00d6rne\u011fin, otozomal dominant LGMD\n(LGMD tip 1) hasta kay\u0131tlar\u0131, ara\u015ft\u0131rma ve tedavi bulma a\u00e7\u0131s\u0131ndan hayati \u00f6nem ta\u015f\u0131yacakt\u0131r.<\/p>\n\n\n\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi\" edilebilseydi, ne olurdu?\nyapmak isteyece\u011finiz ilk \u015fey<\/strong>:<\/p>\n\n\n\n<p>Yar\u0131n iyile\u015fmi\u015f olsayd\u0131m, bunu kutlamak i\u00e7in dans etmeye giderdim!!! <\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\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\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD &#8220;SPOTLIGHT INTERVIEW&#8221; Name:&nbsp; Natasha&nbsp; Age: 25 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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