{"id":1163,"date":"2016-03-28T17:23:19","date_gmt":"2016-03-28T22:23:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1163"},"modified":"2016-03-28T17:23:19","modified_gmt":"2016-03-28T22:23:19","slug":"emily","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/03\/28\/emily\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Emily"},"content":{"rendered":"

03\/28\/2016<\/strong><\/p>\n

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

\u0130sim:<\/strong>\u00a0 Emily\u00a0\u00a0\u00a0\u00a0 Ya\u015f<\/strong>: 29 yrs. old\"LGMD2B<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2B<\/p>\n

 <\/p>\n

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

LGMD2B te\u015fhisimin onay\u0131n\u0131 28 ya\u015f\u0131nda ald\u0131m ancak 24 ya\u015f\u0131ndayken zaten \u015f\u00fcpheleniliyordu.<\/p>\n

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

\u0130lk belirtim merdiven \u00e7\u0131kmakta zorlanmakt\u0131 ve ayr\u0131ca kitapl\u0131\u011f\u0131mdaki kitaplara ula\u015fmak i\u00e7in parmak u\u00e7lar\u0131mda duramad\u0131\u011f\u0131m\u0131 fark ettim<\/p>\n

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

Hay\u0131r, sadece ben var\u0131m - tek ba\u015f\u0131ma!<\/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

Bir\u00e7ok zorluk var. Tekerlekli sandalye kullanmad\u0131\u011f\u0131m halde \"engelli\" olarak kabul edilmeye \u00e7al\u0131\u015fmak gibi. \u0130nsanlar\u0131n genel olarak benimle bu konuda konu\u015fmak istemediklerini g\u00f6r\u00fcyorum, bu da \u00e7ok izole edici olabiliyor! Bazen kendimden utan\u0131yor ve endi\u015feleniyorum. \u0130nsanlar\u0131n \u00f6n\u00fcnde d\u00fc\u015fmek en k\u00f6t\u00fcs\u00fc ve bir zamanlar yapabildi\u011fim \u015feyleri yapmakta zorlanmak olduk\u00e7a \u00fcz\u00fcc\u00fc. Ko\u015fabilmeyi \u00f6zl\u00fcyorum! Ayr\u0131ca kendinizi a\u00e7\u0131klamaya \u00e7al\u0131\u015fma ihtiyac\u0131. Yalpalamak ve kendimi ac\u0131nas\u0131 ya da zay\u0131f hissetmek.<\/p>\n

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

\u015eu anda evden ayr\u0131l\u0131yorum ve k\u0131rsalda ba\u011f\u0131ms\u0131z olarak ya\u015f\u0131yorum. Ayr\u0131ca Muscular Dystrophy UK i\u00e7in akran destek\u00e7isi olarak g\u00f6n\u00fcll\u00fc \u00e7al\u0131\u015f\u0131yorum ki bu benim i\u00e7in inan\u0131lmaz bir ba\u015far\u0131.<\/p>\n

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

LGMD'ye sahip olmak bana kesinlikle farkl\u0131 bir bak\u0131\u015f a\u00e7\u0131s\u0131 kazand\u0131rd\u0131! Hayattaki k\u00fc\u00e7\u00fck \u015feyleri takdir etmeyi \u00f6\u011frendim ve her \u00f6l\u00e7ekte bir \u015feyler ba\u015farmak i\u00e7in daha kararl\u0131 hale geldim. Kendimi \u00e7ok olumlu hissediyorum ve k\u00f6t\u00fc \u015feylere de\u011fil iyi \u015feylere odaklanmak i\u00e7in te\u015fhisimi tersine \u00e7evirmek istiyorum. Beni daha bilin\u00e7li ve empatik yapt\u0131, kendim gibi ba\u015fkalar\u0131na da yard\u0131m etmek istiyorum. 'H\u0131nz\u0131r' mizah anlay\u0131\u015f\u0131ma da yard\u0131mc\u0131 oldu!<\/p>\n

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

Her \u015feyi! Ben sadece insanlar\u0131n bu ko\u015fullar\u0131n karma\u015f\u0131kl\u0131\u011f\u0131n\u0131 ve durumun kendisini anlamalar\u0131n\u0131 istiyorum.<\/p>\n

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

Bu zor bir soru, o kadar \u00e7ok soru var ki!<\/p>\n

Muhtemelen \u00f6nce ko\u015fmak isterdim ama ayn\u0131 zamanda sportif bir motosiklete binmek ve s\u00fcrmeyi \u00f6\u011frenmek isterdim!<\/p>\n

 <\/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:\u00a0 https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

03\/28\/2016 LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Emily\u00a0\u00a0\u00a0\u00a0 Age: 29 yrs. old […]<\/p>","protected":false},"author":1,"featured_media":1164,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[60],"class_list":["post-1163","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-kingdom"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Emily - 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\/03\/28\/emily\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Emily - 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