{"id":1042,"date":"2015-10-16T12:01:06","date_gmt":"2015-10-16T17:01:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1042"},"modified":"2015-10-16T12:01:06","modified_gmt":"2015-10-16T17:01:06","slug":"annette","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/10\/16\/annette\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Annette"},"content":{"rendered":"

10\/16\/2016<\/strong><\/p>\n

\u0130S\u0130M<\/strong>: Annette \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 YA\u015e<\/strong>: 40-50 ya\u015f aras\u0131\"LGMD2B<\/a><\/p>\n

\u00dcLKE<\/strong>: \u0130rlanda<\/p>\n

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

\u00a0<\/strong><\/p>\n

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

Bana 38 ya\u015f\u0131nda te\u015fhis konuldu.<\/p>\n

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

T\u00f6kezliyor ve d\u00fc\u015f\u00fcyordum. Ayr\u0131ca oturdu\u011fum yerden kalkmakta ve merdiven \u00e7\u0131kmakta da sorun ya\u015f\u0131yordum.<\/p>\n

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

Hay\u0131r, ailemde bu te\u015fhise sahip tek ki\u015fi benim.<\/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

Fark\u0131ndal\u0131k eksikli\u011fi yayg\u0131nd\u0131r. Ayr\u0131ca, Dublin'deki bir\u00e7ok tesis (ula\u015f\u0131m, restoranlar, baz\u0131 tiyatrolar) tekerlekli sandalye eri\u015fimine uygun de\u011fildir.<\/p>\n

LGMD, art\u0131k tam zamanl\u0131 \u00e7al\u0131\u015famad\u0131\u011f\u0131m i\u00e7in i\u015f hayat\u0131m\u0131 etkiledi ve bunun mali sonu\u00e7lar\u0131 oldu.<\/p>\n

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

Olumlu ve iyimser kalmaya \u00e7al\u0131\u015f\u0131yorum. Neredeyse ba\u011f\u0131ms\u0131z bir ya\u015fam s\u00fcrd\u00fcrebildi\u011fim i\u00e7in \u015fansl\u0131y\u0131m. Birle\u015fik Krall\u0131k, Newcastle'da bir klinik sonu\u00e7 \u00e7al\u0131\u015fmas\u0131nda yer almaktan mutluluk duyuyorum (oradaki insanlar harika).<\/p>\n

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

Yapabildiklerimin k\u0131ymetini biliyor ve art\u0131k m\u00fcmk\u00fcn olmayan \u015feyler konusunda moralimi bozmamaya \u00e7al\u0131\u015f\u0131yorum.<\/p>\n

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

Beni asla hayal k\u0131r\u0131kl\u0131\u011f\u0131na u\u011fratmayan harika bir aileye ve \u00e7ekirdek bir arkada\u015f grubuna sahibim.<\/p>\n

LGMD zorlu bir hastal\u0131kt\u0131r ancak iyi bir destek sistemi ile hayat g\u00fczel olabilir. LGMD'nin tedavi edilebilmesi ve ya\u015fam\u0131 de\u011fi\u015ftiren bir durum olmaktan \u00e7\u0131kar\u0131labilmesi i\u00e7in daha fazla fon tahsisi yap\u0131lmas\u0131 \u015fartt\u0131r.<\/p>\n

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

Sevgili ye\u011fenim Emily ile oynar, onu parka g\u00f6t\u00fcr\u00fcr ve iyi bir teyzenin yapmas\u0131 gereken her \u015feyi yapard\u0131m.<\/p>\n

Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir LGMD Spotlight R\u00f6portaj\u0131nda 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":"

10\/16\/2016 NAME:\u00a0 Annette \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 AGE: 40-50 yrs old COUNTRY:\u00a0 Ireland […]<\/p>","protected":false},"author":1,"featured_media":1043,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[56,23],"class_list":["post-1042","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-ireland","tag-lgmd2b"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Annette<\/title>\n<meta name=\"description\" content=\"Annette, 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\/10\/16\/annette\/\" \/>\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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