{"id":2254,"date":"2018-09-18T21:34:38","date_gmt":"2018-09-19T02:34:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2254"},"modified":"2018-09-18T21:34:38","modified_gmt":"2018-09-19T02:34:38","slug":"aric","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/09\/18\/aric\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Aric"},"content":{"rendered":"

LGMD \"Spotlight R\u00f6portaj\u0131\"<\/strong><\/span><\/p>\n

\u0130sim<\/strong><\/span>:\u00a0 Aric \u00a0\u00a0Ya\u015f<\/strong>: 22 yrs. old\"\"<\/a><\/span><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/span><\/p>\n

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

 <\/p>\n

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

Bana 21 ya\u015f\u0131mda te\u015fhis konuldu.<\/span><\/p>\n

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

\u0130lk belirtilerim merdiven \u00e7\u0131kamamak ya da ayak parmaklar\u0131m\u0131n ucunda duramamakt\u0131.<\/span><\/p>\n

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

Benim yok.<\/span><\/p>\n

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

Normal g\u00fcn\u00fcmde merdiven \u00e7\u0131kmakta ve arabamdan inmekte zorlan\u0131yorum - \u00e7o\u011fu insan\u0131n asla d\u00fc\u015f\u00fcnmeyece\u011fi \u015feyler. San\u0131r\u0131m en b\u00fcy\u00fck zorluk da bu, insanlar\u0131n benim gibi insanlar\u0131n neler ya\u015fad\u0131\u011f\u0131n\u0131 daha iyi anlamalar\u0131na yard\u0131mc\u0131 olmaya \u00e7al\u0131\u015fmak. Normal g\u00fcnl\u00fck aktiviteleri neden eskisi gibi yapamad\u0131\u011f\u0131m\u0131 anlatmak zor.<\/span><\/p>\n

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

Lisedeyken son birka\u00e7 y\u0131lda akademik ba\u015far\u0131lar\u0131n yan\u0131 s\u0131ra spor alan\u0131nda da ba\u015far\u0131lar elde ettim. \u00c7al\u0131\u015ft\u0131\u011f\u0131m birka\u00e7 i\u015fte ba\u015fka hi\u00e7bir gencin yakla\u015famad\u0131\u011f\u0131 hedeflere ula\u015ft\u0131m. D\u00fcr\u00fcst olmak gerekirse en b\u00fcy\u00fck ba\u015far\u0131m\u0131n \u015fu anda i\u00e7inde bulundu\u011fum m\u00fccadeleden vazge\u00e7memek oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Bu korkun\u00e7 hastal\u0131k bir insandan ger\u00e7ekten \u00e7ok \u015fey al\u0131p g\u00f6t\u00fcrebiliyor, yataktan kalkabilmek i\u00e7in her g\u00fcn kendime s\u00f6ylemem gereken g\u00fc\u00e7 ve mesaj benim en b\u00fcy\u00fck ba\u015far\u0131m. Kendim ve MD ile ya\u015fayan di\u011ferleri i\u00e7in daha iyi bir ya\u015fam i\u00e7in sava\u015fmaya devam edece\u011fim, hala \u00e7ok gencim ve art\u0131k bu d\u00fcnyada bir fark yaratabilece\u011fime inan\u0131yorum.<\/span><\/p>\n

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

LGMD beni \u00e7ok daha g\u00fc\u00e7l\u00fc bir insana d\u00f6n\u00fc\u015ft\u00fcrd\u00fc ve bu ifadedeki ironi biraz komik. Her g\u00fcne bir l\u00fctuf gibi davran\u0131yorum, yak\u0131n zamanda yerel bir MD etkinli\u011fi i\u00e7in kendi ekibimi kurdum ve \u015fu anda kendi etkinli\u011fim \u00fczerinde \u00e7al\u0131\u015f\u0131yorum! Sadece daha iyi bir yer yaratmak ve bunu ya\u015fayan her \u00e7ocuk ve yeti\u015fkin i\u00e7in umut sa\u011flamak istiyorum.<\/span><\/p>\n

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

Sadece d\u00fcnyan\u0131n ya\u015fad\u0131\u011f\u0131m\u0131z m\u00fccadeleyi, g\u00fcnl\u00fck hayata devam etmenin ne kadar zor olabilece\u011fini bilmesini istiyorum. D\u00fcnyan\u0131n bilmesini istiyorum.<\/span><\/p>\n

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

E\u011fer yar\u0131n iyile\u015fmi\u015f olsayd\u0131m, ger\u00e7ekten ko\u015fmaktan bahsederdim, t\u00fcm ailemi ve arkada\u015flar\u0131m\u0131 davet ederdim ve Forest Gump gibi ko\u015fabildi\u011fimiz kadar ko\u015fard\u0131k. Yol boyunca hepimiz g\u00fcler ve a\u011flard\u0131k. D\u00fcnya kesinlikle benim bir <\/span>\u0130yile\u015fmi\u015f Adam\u0131m!<\/span><\/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 <\/span>at: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD “Spotlight Interview” Name:\u00a0 Aric \u00a0\u00a0Age:\u00a0 22 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2253,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[87],"class_list":["post-2254","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Aric - 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\/2018\/09\/18\/aric\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Aric - 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