{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

\u0130sim<\/strong>: Dylan                                  Ya\u015f<\/strong>: 28 ya\u015f\u0131nda<\/p>\n\n\n\n

\u00dclke<\/strong>: Amerika Birle\u015fik Devletleri<\/p>\n\n\n\n

LGMD Alt Tipi<\/strong>: LGMD 2J \/ R10 Titin ile ilgili<\/p>\n\n\n\n

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

Bana 23 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n\n\n\n

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

Merdiven \u00e7\u0131kmak, yere oturduktan sonra aya\u011fa kalkmak, z\u0131plamak ve \u00e7\u00f6melmek gibi \"normal\" \u015feyleri yapman\u0131n benim i\u00e7in giderek zorla\u015ft\u0131\u011f\u0131n\u0131 fark etmeye ba\u015flad\u0131m. S\u00fcrekli kas yorgunlu\u011fu ya\u015f\u0131yordum ve rastgele d\u00fc\u015f\u00fcyordum. Ko\u015fma yetene\u011fimi kaybettikten ve d\u00fc\u015fmeler s\u0131kla\u015ft\u0131ktan sonra bir \u015feyler oldu\u011funu anlad\u0131k.<\/p>\n\n\n\n

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

Hay\u0131r. Ben tek ve birici\u011fim!<\/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

Bu ac\u0131mas\u0131z bir hastal\u0131kt\u0131r \u00e7\u00fcnk\u00fc sadece do\u011fal olarak g\u00fcc\u00fcm\u00fcz\u00fc ve hareket kabiliyetimizi elimizden almakla kalmaz, umudumuzu ve kendi hayat\u0131m\u0131z \u00fczerindeki kontrol\u00fcm\u00fcz\u00fc de elimizden almaya \u00e7al\u0131\u015f\u0131r. V\u00fccudumuz g\u00f6r\u00fcn\u00fcrde hi\u00e7bir tedavi ya da iyile\u015ftirme olmaks\u0131z\u0131n her g\u00fcn k\u00f6t\u00fcle\u015firken, kendimizi yenilmi\u015f ve ihmal edilmi\u015f hissetmek kolayd\u0131r. Bunun en b\u00fcy\u00fck zorluklar\u0131ndan biri oldu\u011funa inan\u0131yorum - ba\u015f\u0131m\u0131z\u0131 suyun \u00fcst\u00fcnde tutmak. \u0130\u015fte bu y\u00fczden pozitif kalmak ve ne olursa olsun hayat\u0131n\u0131z\u0131 en iyi \u015fekilde ya\u015famak \u00e7ok \u00f6nemlidir!<\/p>\n\n\n\n

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

\u00dclkeyi (44 eyalet) dola\u015f\u0131p d\u00fcnyan\u0131n en iyi adamlar\u0131ndan baz\u0131lar\u0131yla m\u00fczik yapabildi\u011fim i\u00e7in inan\u0131lmaz derecede \u015fansl\u0131 ve talihliyim. Bunu daha ne kadar yapabilece\u011fimden emin de\u011filim ama bu bir r\u00fcyan\u0131n ger\u00e7ekle\u015fmesiydi. Ayn\u0131 zamanda Texas Christian \u00dcniversitesi'nin (Go Frogs) gururlu bir mezunuyum ve \u00e7ocukken satran\u00e7ta eyalet \u015fampiyonuydum. Ayr\u0131ca olduk\u00e7a iyi bir k\u00f6pek babas\u0131 oldu\u011fumu d\u00fc\u015f\u00fcn\u00fcyorum!<\/p>\n\n\n\n

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

Bana her g\u00fcn yeni \u015feyler \u00f6\u011fretiyor. Bu kadar k\u0131sa s\u00fcrede bir \u00f6m\u00fcr boyu s\u00fcrecek bir bak\u0131\u015f a\u00e7\u0131s\u0131 kazand\u0131m. Daha iyi bir problem \u00e7\u00f6z\u00fcc\u00fc oldum. Kendime ve ba\u015fkalar\u0131na kar\u015f\u0131 \u00e7ok daha sab\u0131rl\u0131y\u0131m. Ya\u015fad\u0131\u011f\u0131m her an\u0131n ve att\u0131\u011f\u0131m her ad\u0131m\u0131n de\u011ferini biliyorum. Art\u0131k daha \u00e7ok g\u00fcl\u00fcms\u00fcyorum, bulutlara bak\u0131yorum ve herkese nazik davran\u0131yorum. Birinin kahraman\u0131 olmaya \u00e7al\u0131\u015f\u0131yorum. LGMD'den muzdarip olman\u0131n yan\u0131 s\u0131ra, bir insan\u0131n isteyebilece\u011fi en iyi aile ve arkada\u015flara sahip, ya\u015fayan en \u015fansl\u0131 adam\u0131m.<\/p>\n\n\n\n

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

T\u0131pk\u0131 herkes gibi hedefleri, arzular\u0131, tutkular\u0131 ve duygular\u0131 olan insanlar oldu\u011fumuzu. Bir\u00e7o\u011fumuz da bir zamanlar olduk\u00e7a \"normal\" insanlard\u0131k. Herkes LGMD'li birinin normal g\u00fcnl\u00fck rutinini s\u00fcrd\u00fcrmek i\u00e7in hangi \u00e7emberlerden ve engellerden atlamas\u0131 gerekti\u011fini bilseydi, insanlar toplulu\u011fumuzun ne kadar zorlu ve diren\u00e7li oldu\u011funu anlamaya ba\u015flard\u0131. Bunun u\u011fruna sava\u015fmaya de\u011fer bir topluluk ve hastal\u0131k oldu\u011funu fark edeceklerdir. Bu y\u00fczden ara\u015ft\u0131rmac\u0131lar ve bilim insanlar\u0131 bu gizemli hastal\u0131klar\u0131 \u00e7\u00f6zerken siz de bir savunucu olun!<\/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

K\u00f6pe\u011fimle bah\u00e7ede ko\u015fturur, ho\u015f ve g\u00fczel bir bayanla dans eder, arkada\u015flar\u0131mla biraz beyzbol oynar ve muhtemelen s\u0131rf bu y\u00fczden bir da\u011fa t\u0131rman\u0131rd\u0131m!<\/p>\n\n\n\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: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Dylan                                  Age:  28 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3465,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[],"class_list":["post-3464","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Dylan - 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\/08\/24\/dylan\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Dylan - 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