{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Jillena"},"content":{"rendered":"<figure class=\"wp-block-image\"><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\/2019\/06\/LGMD2A-Jillena-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2728\"\/><\/figure>\n\n\n\n<p><strong>LGMD\n\"Spotlight r\u00f6portaj\u0131\"<\/strong><\/p>\n\n\n\n<p><strong>\u0130sim<\/strong>:  Jillena\n&nbsp;<strong>Ya\u015f<\/strong>: 32 ya\u015f\u0131nda<\/p>\n\n\n\n<p><strong>\u00dclke<\/strong>:  Birle\u015fik Devletler\nDevletler<\/p>\n\n\n\n<p><strong>LGMD Alt Tipi<\/strong>: LGMD2A - bir t\u00fcr Kalpainopati<\/p>\n\n\n\n<p><strong>KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU? <\/strong>:<\/p>\n\n\n\n<p>Bana ilk olarak LGMD te\u015fhisi konuldu.\n21 ya\u015f\u0131ndayd\u0131m.  Ve sonra, genetik bir hastal\u0131k ald\u0131m.\nLGMD2A alt tipimi birka\u00e7 ay \u00f6nce do\u011frulad\u0131m.<\/p>\n\n\n\n<p><strong>\u0130LK BELIRTILERINIZ NEYDI? <\/strong>:<\/p>\n\n\n\n<p>\u0130kinci \u00e7ocu\u011fumu do\u011furduktan sonra\nmerdivenlerin benim i\u00e7in zorla\u015ft\u0131\u011f\u0131n\u0131 fark ettim. Asl\u0131nda, onlara t\u0131rman\u0131rd\u0131m. I\nskolyozum vard\u0131, bu y\u00fczden merdiven \u00e7\u0131kmakta zorlanmam\u0131 skolyozuma ba\u011fl\u0131yordum.\nAma sonra ikinci \u00e7ocu\u011fum oldu ve baca\u011f\u0131m\u0131 kald\u0131r\u0131ma kald\u0131ramad\u0131m.\nkolayca.  Ayr\u0131ca, her zaman s\u0131skayd\u0131m ve\nNedenini asla bilemedim. Annem bir \u015feylerin yanl\u0131\u015f gitti\u011finden korktu ve beni bir doktora g\u00f6r\u00fcnmeye ikna etti.\nDoktor.<\/p>\n\n\n\n<p><strong>BA\u015eKA AILE \u00dcYELERINIZ VAR MI?\nLGMD VAR:<\/strong><\/p>\n\n\n\n<p>Ailemde ba\u015fka hi\u00e7 kimseye LGMD te\u015fhisi konmad\u0131 ancak annemin fiziksel engellerle ya\u015fayan bir erkek karde\u015fi vard\u0131.  Onda Duchenne Musk\u00fcler Distrofi oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyoruz.<\/p>\n\n\n\n<p><strong>EN B\u00dcY\u00dcK OLARAK NEYI G\u00d6R\u00dcYORSUNUZ?\nLGMD I\u0307LE YA\u015eAMDA KAR\u015eILA\u015eILAN ZORLUKLAR <\/strong>:<\/p>\n\n\n\n<p>\u0130lk olarak ailemin ya\u015famak zorunda oldu\u011fu m\u00fccadele\nbu hastal\u0131\u011f\u0131m olmasayd\u0131 olmazd\u0131. \u0130kincisi, eskiden yapt\u0131\u011f\u0131m gibi gidip, gidip, gidemeyece\u011fim ger\u00e7e\u011fi.\ni\u00e7in. Kollar\u0131m ve bacaklar\u0131m daha zay\u0131f, bu da \u00e7ok \u015fey yapmam\u0131 yorucu hale getiriyor.<\/p>\n\n\n\n<p><strong>EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR <\/strong>:<\/p>\n\n\n\n<p>En b\u00fcy\u00fck ba\u015far\u0131m, tutumumdaki son de\u011fi\u015fikliktir.   I\nHastal\u0131\u011f\u0131m ve kaderim hakk\u0131nda olumsuz olman\u0131n kimseye faydas\u0131 olmad\u0131\u011f\u0131n\u0131 fark ettim.  Ben sadece hayat\u0131 ya\u015famaya karar vermekle kalmad\u0131m.\nfarkl\u0131 bir g\u00f6zl\u00fckle ama bunlar\u0131 da payla\u015fmaya karar verdim\nolu\u015fturdu\u011fum bir Facebook sayfas\u0131nda hayat yolculu\u011fum boyunca d\u00fcnyayla birlikte g\u00f6zl\u00fckler.<\/p>\n\n\n\n<p><strong>LGMD SI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307\nBUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMAK:<\/strong><\/p>\n\n\n\n<p>Bu hastal\u0131\u011fa sahip oldu\u011fumu kabul etti\u011fimde\nve mutsuz olmak zorunda de\u011fildim, Facebook'ta bir sayfa a\u00e7t\u0131m.  Nas\u0131l daha iyi olabilece\u011fime dair tavsiyeler vermeye ba\u015flad\u0131m.\nOlumlu. O zamandan beri \u00e7ok daha fazlas\u0131 oldu. Art\u0131k o kadar \u00e7ok Facebook arkada\u015f\u0131m var ki\nharika bir destek sistemi haline geldi. Buna ek olarak, Shamrock i\u00e7in yapt\u0131\u011f\u0131m bir konu\u015fma s\u0131ras\u0131nda hikayemi payla\u015ft\u0131m.\nMDA i\u00e7in ba\u011f\u0131\u015f kampanyas\u0131.  \u00c7i\u00e7ek a\u00e7t\u0131m\nherkesin kendi de\u011ferini g\u00f6rmesini isteyen bir insana d\u00f6n\u00fc\u015ft\u00fcm! On y\u0131l \u00f6nce, ben\nb\u0131rak\u0131n ba\u015fkas\u0131n\u0131, kendimi bile \u00f6nemsemiyorum.<\/p>\n\n\n\n<p><strong>D\u00dcNYANIN NEYI BILMESINI ISTIYORSUN?\nLGMD HAKKINDA <\/strong>:<\/p>\n\n\n\n<p>D\u00fcnyan\u0131n LGMD'nin son derece zor bir hastal\u0131k oldu\u011funu bilmesini istiyorum\nba\u011f\u0131ms\u0131zl\u0131\u011f\u0131n\u0131z\u0131 elinizden ald\u0131\u011f\u0131 i\u00e7in \u00e7o\u011funlukla ba\u015fa \u00e7\u0131k\u0131lmas\u0131 zor bir durumdur. Sizin gibi\nYa\u015fland\u0131k\u00e7a kaslar\u0131n\u0131z zay\u0131flar ve bu da hareket kabiliyetinizi azalt\u0131r. Bu \u00e7ok zor,\n\u00d6zellikle de etrafta ko\u015fu\u015fturan \u00fc\u00e7 \u00e7ocu\u011funuz varsa.<\/p>\n\n\n\n<p><strong>LGMD'NI\u0307Z \"TEDAVI\u0307 EDI\u0307LEBI\u0307LI\u0307RSE\"\nYARIN, YAPMAK ISTEYECE\u011eINIZ ILK \u015eEY NE OLURDU? <\/strong>:<\/p>\n\n\n\n<p>Y\u00fcr\u00fcy\u00fc\u015fe giderdim.\nColorado da\u011flar\u0131nda ailemle birlikte!<\/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\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; Jillena &nbsp;Age: 32 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","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 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Jillena - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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