{"id":3276,"date":"2020-06-16T14:26:06","date_gmt":"2020-06-16T19:26:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3276"},"modified":"2024-02-09T14:24:37","modified_gmt":"2024-02-09T14:24:37","slug":"ibrahim","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: \u0130brahim"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\" <\/strong><\/p>\n\n\n\n

\u0130sim<\/strong>: \u0130brahim                                 Ya\u015f<\/strong>: 55 ya\u015f\u0131nda<\/p>\n\n\n\n

\u00dclke<\/strong>: T\u00fcrkiye  <\/p>\n\n\n\n

LGMD Alt Tipi<\/strong>: LGMD 2B\/R2 Dysferlin ile ili\u015fkili<\/p>\n\n\n\n

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

Bana 25 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n\n\n\n

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

\u0130lk ba\u015fta tekrarlayan hareketlerde yorgunluk hissediyordum. G\u00fc\u00e7s\u00fczl\u00fck ayak bileklerimde ba\u015fl\u0131yor gibi g\u00f6r\u00fcn\u00fcyordu. Daha \u00e7ok sol aya\u011f\u0131mdayd\u0131.<\/strong><\/p>\n\n\n\n

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

Hay\u0131r, ailemde ayn\u0131 te\u015fhise sahip kimse yok.<\/p>\n\n\n\n

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

Ba\u015flang\u0131\u00e7ta hafif bir yorgunluk vard\u0131. \u00d6\u011fretmen oldu\u011fum i\u00e7in uzun s\u00fcre ayakta kalmak i\u015f performans\u0131m\u0131 olumsuz etkiliyordu. Tek bastonla y\u00fcr\u00fcmeye ba\u015flad\u0131m ama i\u015fe gitmekte zorlan\u0131yordum. Sandalye kullanmaya ba\u015flad\u0131m.<\/p>\n\n\n\n

Yava\u015f ilerleyen bir kas hastal\u0131\u011f\u0131 t\u00fcr\u00fc oldu\u011fu i\u00e7in \u00e7evremdekilere kendimi anlatmakta zorland\u0131m.<\/strong><\/p>\n\n\n\n

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

\u00d6\u011fretmenlik mesle\u011fini b\u0131rakt\u0131ktan sonra ba\u015fkalar\u0131n\u0131n hayat\u0131na dokunmam gerekti\u011fini d\u00fc\u015f\u00fcnd\u00fcm. \u00d6nce T\u00fcrkiye Kas Hastal\u0131klar\u0131 Derne\u011fi'nde (MDA gibi) \u00e7al\u0131\u015ft\u0131m. Daha sonra HASGAP (Hasta G\u00f6n\u00fcll\u00fcleri A\u011f\u0131) i\u00e7in de \u00e7al\u0131\u015ft\u0131m. Halen \u0130zmir-T\u00fcrkiye Kas Hastal\u0131klar\u0131 \u015eubesi'nde g\u00f6n\u00fcll\u00fc olarak \u00e7al\u0131\u015f\u0131yorum. Ortaokul y\u0131llar\u0131mdan beri \u015fiir ve yaz\u0131 tutkum var. \u0130ki \u015fiir kitab\u0131m var (Ay Mavisi Geceler ve K\u0131y\u0131s\u0131z Bir Deniz).<\/p>\n\n\n\n

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

LGMD ile ya\u015famak \u00f6l\u00fcm\u00fc cebimde ta\u015f\u0131mam\u0131 sa\u011flayarak hayattan daha fazla tat almam\u0131 sa\u011flad\u0131. Daha \u00fcretken hale getirdi. Hayata daha \u00e7ok dokunmam\u0131 sa\u011flad\u0131.<\/p>\n\n\n\n

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

D\u00fcnyan\u0131n bizim d\u00fcnyam\u0131z\u0131 tan\u0131mas\u0131n\u0131n tek yolu fark yaratmakt\u0131r. Hayal etmedik\u00e7e, \u00fcretmedik\u00e7e ve \u00fcrettiklerimizi payla\u015fmad\u0131k\u00e7a ya\u015fam kalitemizi de\u011fi\u015ftirmekten bahsedemeyiz. \u00c7o\u011fumuz hastal\u0131klar\u0131m\u0131zla sava\u015f\u0131yoruz. Bu \u00e7aban\u0131n i\u00e7inde hayal ve emek yoksa hi\u00e7bir \u015feyi de\u011fi\u015ftiremeyiz. Hayal etmeyen ve \u00fcretmeyen zihniyetler bunu anlayamaz.<\/p>\n\n\n\n

Kalbimizin ve beynimizin \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 bilmelerini istiyorum.<\/p>\n\n\n\n

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

Hayal g\u00fcc\u00fcmde de\u011fi\u015fiklikler yapard\u0131m. Galaksiler aras\u0131nda ko\u015fard\u0131m ve galaksilerin \u00e7ocuk parklar\u0131nda oynard\u0131m. 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: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name:  \u0130brahim                                 Age:  55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3277,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3276","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: \u0130brahim - 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\/2020\/06\/16\/ibrahim\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: \u0130brahim - 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