{"id":1195,"date":"2016-05-14T12:19:56","date_gmt":"2016-05-14T17:19:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1195"},"modified":"2016-05-14T12:19:56","modified_gmt":"2016-05-14T17:19:56","slug":"dave","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/05\/14\/dave\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Dave"},"content":{"rendered":"<p>05\/14\/2016:<\/p>\n<p>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n<p><strong>\u0130sim<\/strong>:  Dave\u00a0\u00a0\u00a0 <strong>Ya\u015f<\/strong>: 27 yrs. old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/05\/LGMD2A-Dave-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1196 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/05\/LGMD2A-Dave-H-300x169.png\" alt=\"LGMD2A -Dave H\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>: Avustralya<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:  LGMD 2A \/ Kalpainopati<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>San\u0131r\u0131m 14 ya\u015f civar\u0131nda te\u015fhis kondu. Lisedeyken oldu\u011funu biliyorum.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>Her Cumartesi golf oynamaya giderdim ve eve d\u00f6nd\u00fc\u011f\u00fcmde gidip birka\u00e7 saat uyumam gerekirdi.   Her yerim a\u011fr\u0131rd\u0131.   Bu y\u00fczden annem neden s\u00fcrekli yorgun oldu\u011fumu \u00f6\u011frenmek i\u00e7in beni doktora g\u00f6t\u00fcrd\u00fc.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/p>\n<p>Ailemde herhangi bir Musk\u00fcler Distrofi t\u00fcr\u00fc olan tek ki\u015fi benim.<\/p>\n<p><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n<p>Ya\u015fad\u0131\u011f\u0131m en b\u00fcy\u00fck sorun Musk\u00fcler Distrofimi insanlara (aileme, arkada\u015flar\u0131ma ve yabanc\u0131lara) a\u00e7\u0131klamak ve bana tamamen inanmamalar\u0131n\u0131 sa\u011flamakt\u0131. Sadece tembel oldu\u011fum i\u00e7in yorgun oldu\u011fumu d\u00fc\u015f\u00fcn\u00fcyorlard\u0131.<\/p>\n<p>Baca\u011f\u0131mda sakinle\u015ftiremedi\u011fim \u015fiddetli kramplarla bir geceyi hastanede ge\u00e7irdim. \u00dc\u00e7 hafta boyunca do\u011fru d\u00fczg\u00fcn y\u00fcr\u00fcyemedim ve hala ac\u0131 i\u00e7inde \u00e7al\u0131\u015fmak zorunda kald\u0131m.   Merdiven \u00e7\u0131kmakta ve uzun s\u00fcre a\u011f\u0131r \u015feyler ta\u015f\u0131makta her zaman sorun ya\u015fad\u0131m.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>En b\u00fcy\u00fck ba\u015far\u0131m bu \u015eubat ay\u0131nda e\u015fim Rebecca ile evlenmek oldu.   O benim g\u00fcc\u00fcm ve yoluma devam etmem i\u00e7in motivasyon kayna\u011f\u0131m oldu.  Avustralya'da ikinci nesil bir kamyon \u015fof\u00f6r\u00fcy\u00fcm ve bu gurur duydu\u011fum bir \u015fey!  Yine de i\u015fim bazen olduk\u00e7a fiziksel olabiliyor ve bu da beni zorluyor.   E\u015fim Rebecca t\u00fcm bu s\u00fcre\u00e7te bana yard\u0131mc\u0131 oluyor.  O benim harika kad\u0131n\u0131m.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>\u0130nsanlar\u0131 durumlar\u0131 hakk\u0131nda dinlemeyi \u00f6\u011frendim. Facebook'ta ileti\u015fim halinde oldu\u011fum pek \u00e7ok harika arkada\u015f edindim. Onlar\u0131n endi\u015felerini ve sorunlar\u0131n\u0131 dinliyor ve onlardan da tavsiye istiyorum. En \u00f6nemlisi, her \u015feyi kendi ba\u015f\u0131ma yapmaya \u00e7al\u0131\u015fmak yerine ihtiyac\u0131m oldu\u011funda yard\u0131m istemenin sorun olmad\u0131\u011f\u0131n\u0131 \u00f6\u011frendim.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>D\u00fcnyan\u0131n Limb Girdle Muscular Dystrophy'nin var oldu\u011funu bilmesini istiyorum!!!    \u0130nsanlara durumumu ka\u00e7 kez a\u00e7\u0131klamak zorunda kald\u0131m ve neredeyse bana inanm\u0131yorlar.   LGMD hastal\u0131\u011f\u0131m\u0131n spor salonuna giderek d\u00fczeltilemeyece\u011fini veya iyile\u015ftirilemeyece\u011fini anlam\u0131yorlar.   LGMD'nin tedavisi ya da tedavisi yok.  Durumumuz \u00fczerinde hi\u00e7bir kontrol\u00fcm\u00fcz yok; bu bizim bir par\u00e7am\u0131z.... m\u00fccadele etti\u011fimiz bir par\u00e7am\u0131z ama bizi biz yapan da bu.<\/p>\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n<p>Bir aileye sahip olmak d\u0131\u015f\u0131nda ki\u015fisel hedefim.... yeniden basketbol oynamak olurdu. B\u00fcy\u00fcrken \u00e7ok severdim. Kesinlikle sahaya geri d\u00f6ner ve m\u00fcmk\u00fcn oldu\u011funca uzun s\u00fcre ko\u015fard\u0131m.<\/p>\n<p>&nbsp;<\/p>\n<p>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<\/p>","protected":false},"excerpt":{"rendered":"<p>05\/14\/2016: LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Dave\u00a0\u00a0\u00a0 Age: \u00a027 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1196,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,15],"class_list":["post-1195","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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