{"id":1192,"date":"2016-04-30T08:00:30","date_gmt":"2016-04-30T13:00:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1192"},"modified":"2016-04-30T08:00:30","modified_gmt":"2016-04-30T13:00:30","slug":"rebecca","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/04\/30\/rebecca\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Rebecca"},"content":{"rendered":"<p><strong>04\/30\/2016 \u00a0<\/strong><strong>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u0130S\u0130M<\/strong>:  Rebecca\u00a0\u00a0\u00a0 <strong>YA\u015e<\/strong>: 29 ya\u015f\u0131nda<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/04\/LGMD2A-Becc.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1193 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\/2016\/04\/LGMD2A-Becc-300x169.png\" alt=\"LGMD2A - Becc\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dcLKE<\/strong>:  Avustralya<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:   LGMD2A \/ Kalpainopati<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 26 ya\u015f\u0131ndayken LGMD2A te\u015fhisi kondu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>\u0130lk belirtilerim aras\u0131nda merdivenleri ve yoku\u015flar\u0131 \u00e7\u0131kmakta zorlanmak ve ellerimi kullanmadan aya\u011fa kalkamamak vard\u0131.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>D\u00f6rt ki\u015fiden bir tek ben var\u0131m.<\/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>Benim i\u00e7in en b\u00fcy\u00fck zorluk yorgunlukla m\u00fccadele etmek.  \u00c7ok fazla \u015fey yapmakla yeterince yapmamak aras\u0131nda bir denge bulmak ger\u00e7ekten zor olabiliyor.  Temelde her y\u0131l de\u011fi\u015fime uyum sa\u011flad\u0131\u011f\u0131m\u0131 fark ettim.  Benim yapamad\u0131\u011f\u0131m aktiviteleri ba\u015fkalar\u0131n\u0131n yapt\u0131\u011f\u0131n\u0131 g\u00f6rd\u00fc\u011f\u00fcmde kendime bu kadar y\u00fcklenmemek de bir zorluk.  Bir g\u00f6revi tek ba\u015f\u0131ma yerine getiremedi\u011fimde yard\u0131m istemek zorlay\u0131c\u0131 olabiliyor.  A\u011fr\u0131 - En son ne zaman uyand\u0131\u011f\u0131m\u0131 ve hi\u00e7bir a\u011fr\u0131, rahats\u0131zl\u0131k ve k\u0131r\u0131lganl\u0131k hissetmedi\u011fimi hat\u0131rlayam\u0131yorum.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>K\u0131z\u0131m 10 ya\u015f\u0131nda ve o benim en b\u00fcy\u00fck ba\u015far\u0131m.  Hayatta baz\u0131 \u015feylerde iyi olmayabilirim ama d\u00fcr\u00fcst\u00e7e s\u00f6yleyebilirim ki ben en iyi anneyim!  O benim hayat\u0131m.  Ve o b\u00fcy\u00fcd\u00fck\u00e7e, bana birden fazla \u015fekilde bakmaya ba\u015fl\u0131yor.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>Bedenen zay\u0131fl\u0131yor olabilirim ama zihnen daha g\u00fc\u00e7l\u00fc hale geldim.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Bu, bildi\u011finiz her \u015feyi ortadan kald\u0131r\u0131r.<\/p>\n<p>Ayr\u0131ca LGMD2A i\u00e7in bir \u00e7are ve tedavi bulmaya odaklanm\u0131\u015f bir organizasyon olan Coalition to Cure Calpain 3'\u00fc de bilmelerini istiyorum.<\/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>Yar\u0131n \"iyile\u015fmi\u015f\" olsayd\u0131m, ailemle birlikte s\u0131n\u0131r tan\u0131madan d\u0131\u015far\u0131 \u00e7\u0131kard\u0131m.  K\u0131z\u0131mla ko\u015fturur ve 100 merdiven t\u0131rman\u0131rd\u0131m.<\/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:\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>04\/30\/2016 \u00a0LGMD \u201cSpotlight Interview\u201d &nbsp; NAME:\u00a0 Rebecca\u00a0\u00a0\u00a0 AGE: 29 years [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1193,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,15],"class_list":["post-1192","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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