{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n

\u0130S\u0130M<\/strong>: Maram\u00a0\u00a0\u00a0 YA\u015e<\/strong>: 26 ya\u015f\u0131nda\"LGMD2E<\/a><\/p>\n

\u00dcLKE<\/strong>: Filistin<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n

Bana 10 ya\u015f\u0131nda musk\u00fcler distrofi te\u015fhisi kondu. 26 ya\u015f\u0131ndayken LGMD2E te\u015fhisimin genetik onay\u0131n\u0131 ald\u0131m.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n

Ben 3 ya\u015f\u0131ndayken ailem y\u00fcr\u00fcy\u00fc\u015f\u00fcm\u00fcn dengesiz oldu\u011funu ve yerden kalkmakta zorland\u0131\u011f\u0131m\u0131 fark etti.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n

Hay\u0131r, ailemde bir tek ben var\u0131m.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n

\u00c7ok fazla zorluk var. Bir\u00e7ok insan i\u00e7in basit \u015feyler benim en b\u00fcy\u00fck zorluklar\u0131m ama tuvalete gitmek ve uyurken pozisyonumu bir yandan di\u011fer yana de\u011fi\u015ftirmek beni \u00e7ok g\u00fc\u00e7s\u00fcz hissettiriyor.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n

Benim \u00fclkemde insanlar LGMD hakk\u0131nda hi\u00e7bir \u015fey bilmiyor. Ben her g\u00fcn sosyal medya arac\u0131l\u0131\u011f\u0131yla hastal\u0131\u011f\u0131n fark\u0131ndal\u0131\u011f\u0131n\u0131 artt\u0131rmaya \u00e7al\u0131\u015f\u0131yorum. \u00dclkemde ve Arap d\u00fcnyas\u0131nda bir\u00e7ok hastaya tan\u0131lar\u0131n\u0131 do\u011frulamak i\u00e7in genetik test yapt\u0131rmalar\u0131na ve hayat\u0131m\u0131z\u0131 biraz daha kolayla\u015ft\u0131rmak i\u00e7in ihtiyac\u0131m\u0131z olan ekipman\u0131 almalar\u0131na yard\u0131mc\u0131 oldum. Ayr\u0131ca d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndan hastalar\u0131mla ileti\u015fime ge\u00e7tim ve yak\u0131n arkada\u015f olduk. Onlar benim en b\u00fcy\u00fck ba\u015far\u0131lar\u0131m.<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n

Bunun beni bir \u015fekilde daha g\u00fc\u00e7l\u00fc k\u0131ld\u0131\u011f\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcyorum. Etraf\u0131mdaki insanlara kar\u015f\u0131 daha \u015fefkatli oldum. Harika ailem de dahil olmak \u00fczere hayat\u0131mdaki her k\u00fc\u00e7\u00fck nimetin k\u0131ymetini biliyorum. Tanr\u0131'ya daha yak\u0131n oldum. Bence bu beni iyi y\u00f6nde de\u011fi\u015ftirdi ve bug\u00fcn oldu\u011fum ki\u015fiyi seviyorum.<\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

Normal insanlardan \u00e7ok da farkl\u0131 olmad\u0131\u011f\u0131m\u0131z\u0131 bilmelerini istiyorum. Ne oldu da basit bir genetik hata ya da mutasyon onlar hareket edebilirken benim hareket etmemi zorla\u015ft\u0131rd\u0131. Nedeni o kadar karma\u015f\u0131k de\u011fil ve bunu anlarsak tedaviyi de bulabiliriz.<\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n

Aileme s\u0131ms\u0131k\u0131 sar\u0131lmak ve onlar\u0131 hi\u00e7 b\u0131rakmamak istiyorum. Onlars\u0131z hayat\u0131n ne kadar zor olaca\u011f\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcp duruyorum.<\/p>\n

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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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