{"id":1440,"date":"2017-03-25T10:00:37","date_gmt":"2017-03-25T15:00:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1440"},"modified":"2017-03-25T10:00:37","modified_gmt":"2017-03-25T15:00:37","slug":"cecilia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Cecilia"},"content":{"rendered":"<p><strong>LGMD Spotlight R\u00f6portaj\u0131<\/strong><\/p>\n<p><strong>\u0130sim:<\/strong> Cecilia \u00a0\u00a0<strong>YA\u015e:<\/strong> 36 y\u0131l<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/03\/LGMD2A-Cecilia.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1439 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\/03\/LGMD2A-Cecilia-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke:<\/strong> Arjantin<\/p>\n<p><strong>LGMD Alt Tip:\u00a0 <\/strong>LGMD2A\/Calpainopathy<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong><\/p>\n<p>Bana 12 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong><\/p>\n<p>Ayak parmaklar\u0131m\u0131n \u00fczerinde y\u00fcr\u00fcmeye ba\u015flad\u0131m. Ayr\u0131ca, k\u00fc\u00e7\u00fckl\u00fc\u011f\u00fcmden beri annem, \u00f6rne\u011fin bir topu kovalarken gecikmi\u015f tepkiler verdi\u011fimi fark etti.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>Hay\u0131r, ailemde LGMD hastas\u0131 olan tek ki\u015fi benim.<\/p>\n<p><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n neler oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong><\/p>\n<p>En b\u00fcy\u00fck zorluk ilk de\u011fi\u015fikliklere, yapamaz hale geldi\u011fim ilk \u015feylere al\u0131\u015fmakt\u0131: \u00f6rne\u011fin merdiven \u00e7\u0131kmak ve yerden kalkmak.  Daha ileri bir a\u015famada, yataktan, sandalyeden vb. kalkabilmek i\u00e7in stratejiler geli\u015ftirmek ve ard\u0131ndan y\u00fcr\u00fcme yetene\u011fini kaybetmenin yas\u0131n\u0131 tutmak ve yar\u0131 zamanl\u0131 veya tam zamanl\u0131 bir tekerlekli sandalye veya scooter kullanmaya ba\u015flamak.<\/p>\n<p>Ayr\u0131ca, dengeyi bulmak ve v\u00fccudumun s\u0131n\u0131rlar\u0131n\u0131 bilmek de zorlu bir g\u00f6revdi.  Kendimi yormadan ne kadar ileri gidebilece\u011fimi bilmek; neyi kendim yapaca\u011f\u0131ma ve ne zaman yard\u0131m isteyece\u011fime karar vermek.<\/p>\n<p>\u0130yi olan \u015fey, de\u011fi\u015fiklikleri kabul etmeyi, zeki ve yarat\u0131c\u0131 olmay\u0131, i\u015fleri ba\u015fka \u015fekillerde yapmak i\u00e7in \u00e7\u00f6z\u00fcmler d\u00fc\u015f\u00fcnmeyi ve alternatifler aramay\u0131 \u00f6\u011frendim.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong><\/p>\n<p>En b\u00fcy\u00fck ba\u015far\u0131m, her zaman istedi\u011fimi elde etmi\u015f olmam ve bunu yapmaya devam etmemdir.  Ailem bunun i\u00e7in \u00e7ok \u00f6vg\u00fcy\u00fc hak ediyor, bana her zaman hastal\u0131\u011f\u0131n bir engel veya bahane olmad\u0131\u011f\u0131n\u0131, \"bir yol bulabilirsek\" her \u015feyin m\u00fcmk\u00fcn oldu\u011funu, engelleri olan ama bizi hedefimize g\u00f6t\u00fcrecek alternatif bir yol oldu\u011funu \u00f6\u011frettiler.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>E\u011fer bu hastal\u0131\u011f\u0131m olmasayd\u0131, \u015fu an oldu\u011fum ki\u015fi olamazd\u0131m.  Zorluklar b\u00fcy\u00fcmemi ve g\u00fc\u00e7l\u00fc olmam\u0131 sa\u011flad\u0131.  Yapamad\u0131klar\u0131m\u0131 ve beni etkileyen ko\u015fullar\u0131 inkar etmiyorum.  Meydana gelen de\u011fi\u015fikliklerle olumlu bir tutumla y\u00fczle\u015fme becerisi geli\u015ftirdim. Bir \u015fekilde her \u015feyin yoluna girece\u011fini biliyorum.<\/p>\n<p>Bu benim profesyonel kariyerimi ve \u00e7al\u0131\u015fmay\u0131 se\u00e7ti\u011fim alan\u0131 etkiledi.  \u00d6zellikle fiziksel eri\u015filebilirlik s\u00f6z konusu oldu\u011funda, engelli insanlar\u0131n haklar\u0131 ad\u0131na sivil toplum kurulu\u015flar\u0131nda \u00e7al\u0131\u015f\u0131yorum.  Ayr\u0131ca burada, Arjantin'de, Musk\u00fcler Distrofi Derne\u011fi'nin bir par\u00e7as\u0131y\u0131m ve engellili\u011fe neden olan durumlar\u0131 ya\u015fayan di\u011fer ki\u015filere cesaret veren makaleler yaz\u0131yorum.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong><\/p>\n<ol>\n<li>Bu hastal\u0131k, t\u0131pk\u0131 di\u011ferleri gibi, insanlar\u0131 di\u011ferlerinden daha a\u015fa\u011f\u0131 yapmaz.<\/li>\n<li>Zay\u0131f ve k\u0131r\u0131lgan oldu\u011fumuz gibi mitleri y\u0131kmak i\u00e7in.<\/li>\n<li>\u00d6nyarg\u0131lar\u0131 a\u015fmak i\u00e7in.<\/li>\n<li>E\u015fit haklara sahip olabilmemiz i\u00e7in: okuyabilmemiz, \u00e7al\u0131\u015fabilmemiz, a\u015f\u0131k olabilmemiz ve pek \u00e7ok \u015feyi ba\u015farabilmemiz i\u00e7in.<\/li>\n<\/ol>\n<p>Ben hayat\u0131n\u0131 dolu dolu ya\u015famaya kararl\u0131 bir insan\u0131m. Herkesin arad\u0131\u011f\u0131 \u015fey bu de\u011fil mi?<\/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>O kadar \u00e7ok \u015fey hayal edebiliyorum ki!  \u00c7ok \u00f6zel bir \u015fey de\u011fil, sadece bedenimle yeniden ba\u011flant\u0131 kurmak: ko\u015fmak, z\u0131plamak, merdiven \u00e7\u0131kmak, bisiklete binmek, ye\u011fenimle yerde oynamak, giremedi\u011fim t\u00fcm yerlere gitmek.<\/p>\n<p>Ve a\u00e7\u0131k\u00e7as\u0131, hala bir tedavi bekleyenlere yard\u0131m etmeye devam etmek i\u00e7in daha fazla itici g\u00fcce sahip olurdum!  Ben de bunun bir par\u00e7as\u0131y\u0131m.<\/p>\n<p>&nbsp;<\/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: <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 Spotlight Interview Name: Cecilia \u00a0\u00a0AGE: 36 years Country: Argentina [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1439,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[72],"class_list":["post-1440","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-argentina"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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