{"id":990,"date":"2015-08-18T11:15:27","date_gmt":"2015-08-18T16:15:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=990"},"modified":"2015-08-18T11:15:27","modified_gmt":"2015-08-18T16:15:27","slug":"martin","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/08\/18\/martin\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Martin"},"content":{"rendered":"

08\/18\/2015<\/strong><\/p>\n

\u0130sim<\/strong>: Martin \u00a0YA\u015e<\/strong>: 42 ya\u015f\u0131nda\"LGMD2A<\/a><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Krall\u0131k<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/p>\n

 <\/p>\n

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

Bana 23 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n

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

Bir garajda d\u00fc\u015ft\u00fcm, dizim \u00e7\u0131kt\u0131 ve beklenen s\u00fcrede kendili\u011finden iyile\u015fmedi.<\/p>\n

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

Evet, a\u011fabeyimde de LGMD var.<\/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

En b\u00fcy\u00fck zorluklar\u0131m merdiven \u00e7\u0131kmak ve insanlar\u0131n m\u00fcmk\u00fcn oldu\u011funca uzun s\u00fcre ayakta kalmaya kararl\u0131, y\u00fcr\u00fcme engelli bir insan olman\u0131n ne kadar zor oldu\u011funu anlamalar\u0131n\u0131 sa\u011flamak. (ve biraz sallan\u0131yor)<\/p>\n

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

Musk\u00fcler Distrofi hakk\u0131nda yazabilece\u011fimi ve insanlar\u0131n da beni dinledi\u011fini fark ettim! Fark\u0131ndal\u0131k yaratmaya ve ara\u015ft\u0131rmalar i\u00e7in hayati fonlar sa\u011flamaya devam ettim, Parlamento binalar\u0131na kat\u0131ld\u0131m, spor ve TV \u015fahsiyetlerini sosyal medya arac\u0131l\u0131\u011f\u0131yla bu ko\u015fullardan haberdar ettim, fark\u0131ndal\u0131k yaratma ve ara\u015ft\u0131rmalar i\u00e7in fon sa\u011flama \u00e7abalar\u0131m i\u00e7in MDUK taraf\u0131ndan takdir edildim ve \u00f6d\u00fcllendirildim, ba\u015fkalar\u0131na yard\u0131m eden bir konumda olmak i\u00e7in kariyerimi de\u011fi\u015ftirdim, \u00fc\u00e7 harika k\u0131za baba oldum, iyi bir rol model olmaya ve her zaman pozitif kalmaya \u00e7al\u0131\u015ft\u0131m.<\/p>\n

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

Olduk\u00e7a ironik bir \u015fekilde LGMD'nin beni d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcmden daha g\u00fc\u00e7l\u00fc hale getirdi\u011fini d\u00fc\u015f\u00fcn\u00fcyorum, herkesin bu ko\u015fullar hakk\u0131nda her \u015feyi bilmesini sa\u011flamak ve gelecekte bir\u00e7ok ki\u015finin hayat\u0131n\u0131 kolayla\u015ft\u0131rmak konusunda son derece kararl\u0131y\u0131m.<\/p>\n

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

Var oldu\u011funu bilmek iyi bir ba\u015flang\u0131\u00e7 olurdu! Tan\u0131 konulduktan ve y\u0131llar sonra bu durum hakk\u0131nda konu\u015fmaya ba\u015flad\u0131ktan sonra ailemin, arkada\u015flar\u0131m\u0131n ve genel olarak toplumun Musk\u00fcler Distrofinin H\u0130\u00c7B\u0130R t\u00fcr\u00fcn\u00fc veya \u00e7e\u015fidini duymad\u0131\u011f\u0131n\u0131 fark ettim ve bunun de\u011fi\u015fmesi gerekiyor; insanlar\u0131n bu durumlar\u0131 bilmesi \u015fart.<\/p>\n

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

Bir kumsalda olabildi\u011fince h\u0131zl\u0131 ko\u015fmak ('Chariots of fire' filmini d\u00fc\u015f\u00fcn\u00fcn ve Vangelis'in m\u00fczi\u011fini de!) ve sonra t\u00fcm k\u0131zlar\u0131m ve e\u015fimle kocaman sar\u0131lmak.<\/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<\/a><\/p>","protected":false},"excerpt":{"rendered":"

08\/18\/2015 Name: Martin \u00a0AGE: 42 yrs. old Country: United Kingdom […]<\/p>","protected":false},"author":1,"featured_media":991,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,20],"class_list":["post-990","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-kingdom"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Martin<\/title>\n<meta name=\"description\" content=\"Martin, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/08\/18\/martin\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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