{"id":1004,"date":"2015-09-08T10:17:31","date_gmt":"2015-09-08T15:17:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1004"},"modified":"2015-09-08T10:17:31","modified_gmt":"2015-09-08T15:17:31","slug":"shelley","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/09\/08\/shelley\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Shelley"},"content":{"rendered":"

09\/08\/2015<\/p>\n

 <\/p>\n

\u0130sim<\/strong>: Shelley YA\u015e: 50\"LGMD2A<\/a><\/p>\n

\u00dcLKE<\/strong>: Kanada<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/p>\n

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

Bana 11 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

\u0130lk belirtilerim ayak parmaklar\u0131m\u0131n ucunda y\u00fcr\u00fcmek ve merdiven \u00e7\u0131kmakta zorlanmakt\u0131.<\/p>\n

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

Evet, t\u00fcm karde\u015flerim etkilenmi\u015f durumda. K\u0131z karde\u015fim Michele ve erkek karde\u015fim John'un her ikisinde de LGMD2A var.<\/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

Yirmili ya\u015flar\u0131mdaki en b\u00fcy\u00fck zorluklardan biri fiziksel olarak zay\u0131f olmak ve \u00e7ocuk sahibi olamamak, do\u011fum yapmak ve \u00e7ocu\u011fu ta\u015f\u0131makt\u0131.<\/p>\n

\u00dcniversite ve y\u00fcksekokul diplomas\u0131na sahip olmas\u0131na ra\u011fmen anlaml\u0131 bir i\u015f bulmak da zor olmu\u015ftur. \u0130\u015fverenlerin ve \u00e7al\u0131\u015fanlar\u0131n engelli olman\u0131n gerekliliklerini anlamay\u0131 reddetmesi de bir zorluk olmu\u015ftur.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131lar\u0131mdan biri LGMD ile ya\u015famak ve ba\u015fkalar\u0131n\u0131n farkl\u0131l\u0131klar\u0131n\u0131n \u00fcstesinden gelmelerine yard\u0131mc\u0131 olmak hakk\u0131nda an\u0131lar\u0131m\u0131 yazmak oldu. \u00dcniversiteden mezun olmak da bir ba\u015far\u0131yd\u0131.<\/p>\n

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

Yapabildi\u011fim \u015feyleri hafife alm\u0131yorum. Engelimi an\u0131lar\u0131m ve ilham verici konu\u015fmalar\u0131m arac\u0131l\u0131\u011f\u0131yla ba\u015fkalar\u0131n\u0131 e\u011fitmek i\u00e7in kullan\u0131yorum.<\/p>\n

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

LGMD bireylerin istemli kaslar\u0131ndaki g\u00fc\u00e7ten yoksun b\u0131rak\u0131r ancak zek\u00e2lar\u0131n\u0131 etkilemez. Fiziksel bir engele sahip olmak \u00e7ok sinir bozucu olabilir, ancak bir engel nedeniyle ba\u015fkalar\u0131 taraf\u0131ndan yarg\u0131lanmak \u00e7ok daha k\u00f6t\u00fc olabilir.<\/p>\n

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

Bir \u00e7ift artistik paten giyer ve saatlerce kayard\u0131m. Bana 39 y\u0131l \u00f6nce te\u015fhis konuldu\u011funda, topuk kordonu tendonlar\u0131m uzam\u0131\u015ft\u0131 (kontrakt\u00fcr geli\u015fimi nedeniyle) ve art\u0131k paten kayam\u0131yordum. Bu benim kalbimi k\u0131rd\u0131!<\/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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

09\/08\/2015   Name:\u00a0 \u00a0 Shelley \u00a0\u00a0\u00a0AGE:\u00a0 50 COUNTRY: \u00a0\u00a0\u00a0Canada LGMD […]<\/p>","protected":false},"author":1,"featured_media":1005,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,38,15],"class_list":["post-1004","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-canada","tag-lgmd2a"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Shelley<\/title>\n<meta name=\"description\" content=\"Shelley, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/09\/08\/shelley\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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