{"id":8593,"date":"2024-09-27T17:23:35","date_gmt":"2024-09-27T17:23:35","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8593"},"modified":"2024-09-27T17:25:03","modified_gmt":"2024-09-27T17:25:03","slug":"individual-with-lgmd-dilek","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2024\/09\/27\/individual-with-lgmd-dilek\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Dilek"},"content":{"rendered":"

\"\"<\/p>\n

\u0130sim<\/strong>: Dilek<\/p>\n

Ya\u015f<\/strong>: \u00a039<\/p>\n

\u00dclke<\/strong>: T\u00fcrkiye<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD 2D \/ R3<\/p>\n

 <\/p>\n

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

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

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

Ba\u015flang\u0131\u00e7ta merdiven \u00e7\u0131kmakta zorland\u0131\u011f\u0131m\u0131 fark ettim.<\/p>\n

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

Karde\u015fim 35 ya\u015f\u0131nda<\/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

D\u00fc\u015ft\u00fc\u011f\u00fcmde kalkam\u0131yorum. En ufak bir t\u00f6kezlemede d\u00fc\u015febiliyorum. Kollar\u0131m\u0131 kald\u0131rmakta zorluk \u00e7ekiyorum. Merdiven inip \u00e7\u0131kam\u0131yorum. Sosyal hayat\u0131m s\u0131n\u0131rl\u0131.<\/p>\n

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

Psikolojim g\u00fc\u00e7l\u00fc ve hayata umutla bak\u0131yorum. Tedavi \u00e7abalar\u0131n\u0131 desteklemek i\u00e7in m\u00fccadele ediyorum. \u00c7\u00fcnk\u00fc ben bir anne, bir e\u015f ve bir e\u011fitim \u00e7al\u0131\u015fan\u0131y\u0131m.<\/p>\n

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

Tabii ki olumsuz etkiledi\u011fi yerler de var, sosyal hayat\u0131m daha aktif ve kalabal\u0131k olabilirdi. Maalesef her ortama kat\u0131lam\u0131yorum.<\/p>\n

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

Eri\u015filebilirlik a\u00e7\u0131s\u0131ndan kamusal alanlar\u0131n (yollar, tuvaletler, kafeler, restoranlar vb.) bizler i\u00e7in eri\u015filebilir olmas\u0131n\u0131, hekimlerin, bilim insanlar\u0131n\u0131n, derneklerin ve en \u00f6nemlisi h\u00fck\u00fcmetlerin gen terapisi \u00e7al\u0131\u015fmalar\u0131n\u0131 ve ila\u00e7 \u00e7al\u0131\u015fmalar\u0131n\u0131 desteklemesini ve bizler i\u00e7in kal\u0131c\u0131 \u00e7\u00f6z\u00fcmler bulunmas\u0131n\u0131 umut ediyorum.<\/p>\n

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

K\u0131z\u0131mla birlikte korkmadan denize girmek, bir m\u00fczik aleti \u00e7almak i\u00e7in kursa gitmek, ko\u015fmak, kartopu oynamak gibi bir\u00e7ok hayalim var. Ertelemek zorunda kald\u0131\u011f\u0131m hayat\u0131m\u0131 yeniden ya\u015famak istiyorum.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

Name:\u00a0 Dilek Age: \u00a039 Country: \u00a0Turkey LGMD Sub-Type: \u00a0LGMD 2D […]<\/p>","protected":false},"author":3,"featured_media":8594,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[108],"class_list":["post-8593","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d-turkey"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Dilek - 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\/2024\/09\/27\/individual-with-lgmd-dilek\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Dilek - 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