{"id":1980,"date":"2018-06-03T16:24:02","date_gmt":"2018-06-03T21:24:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1980"},"modified":"2018-06-03T16:24:02","modified_gmt":"2018-06-03T21:24:02","slug":"anne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Anne"},"content":{"rendered":"

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

\u0130sim<\/strong>: Anne\u00a0 \u00a0Ya\u015f<\/strong>: 56 ya\u015f\u0131nda\u00a0\u00a0\"\"<\/a><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2A - Calpainopathy olarak da bilinir<\/p>\n

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

Musk\u00fcler Distrofi oldu\u011fum i\u00e7in bana yakla\u015f\u0131k 4 ya\u015f\u0131mda te\u015fhis konuldu. Spesifik 2A te\u015fhisi 46 ya\u015f\u0131nda yap\u0131lan bir DNA testine kadar ger\u00e7ekle\u015fmedi.<\/p>\n

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

\u0130lk belirtim ayak parmaklar\u0131m\u0131n \u00fczerinde y\u00fcr\u00fcmem ve annemin bir \u015feylerin yolunda gitmedi\u011fine dair \"i\u00e7g\u00fcd\u00fcsel\" bir hisse kap\u0131lmas\u0131yd\u0131.<\/p>\n

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

Hay\u0131r, ailemdeki 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

Toplumun bir par\u00e7as\u0131 olmay\u0131 zor buluyorum. Ba\u015fkalar\u0131n\u0131n evlerine girememek, arabaya atlay\u0131p gidememek ya da ba\u015fka yerlere kolayca u\u00e7amamak kendimi d\u0131\u015flanm\u0131\u015f hissetmeme neden oluyor. Giyinmek i\u00e7in m\u00fccadele ederken arkada\u015flar\u0131m\u0131n ve ailemin yapt\u0131\u011f\u0131 t\u00fcm harika \u015feyleri duymak cesaretimi k\u0131r\u0131yor. \u0130nsanlar\u0131n hayatlar\u0131na dahil olmak ve her zaman sadece kenardan izlemek istemiyorum.<\/p>\n

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

\u00dcniversiteden mezun oldu\u011fum ve ba\u015far\u0131l\u0131 bir kariyer yapt\u0131\u011f\u0131m i\u00e7in gurur duyuyorum. Kurumsal d\u00fcnyada gezinmek ve yeni pozisyonlar i\u00e7in rekabet etmek zordu ama bunu ba\u015fard\u0131m! Art\u0131k \u00e7al\u0131\u015fam\u0131yor olsam da, v\u00fccudum k\u00f6t\u00fcle\u015firken ba\u015far\u0131l\u0131 olabildi\u011fimi bilmek beni iyi hissettiriyor.<\/p>\n

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

LGMD'ye sahip olman\u0131n bana \u00f6ncelikleri belirlemeyi \u00f6\u011fretti\u011fini d\u00fc\u015f\u00fcn\u00fcyorum. Sadece g\u00f6revler i\u00e7in de\u011fil, ya\u015fam kalitesi i\u00e7in de. S\u0131n\u0131rl\u0131 enerjim var ve bunu b\u00fcy\u00fck resim i\u00e7in anlaml\u0131 olan \u015feylere harcamay\u0131 \u00f6\u011frendim. Lavabodaki kirli bula\u015f\u0131klar, kocamla ya da bir arkada\u015f\u0131mla vakit ge\u00e7irmek kadar \u00f6nemli de\u011fil.<\/p>\n

Ayr\u0131ca kendi m\u00fccadelelerimin, m\u00fccadele eden ba\u015fkalar\u0131na kar\u015f\u0131 daha \u015fefkatli olmama yard\u0131mc\u0131 oldu\u011funa inan\u0131yorum.<\/p>\n

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

Bunun ne kadar zay\u0131flat\u0131c\u0131 oldu\u011funu ve tedavi edilebilecek bir \u015fey oldu\u011funu bilmelerini istiyorum! Ara\u015ft\u0131rmalara yap\u0131lacak katk\u0131larla, ba\u015fkalar\u0131 da bu hastal\u0131\u011f\u0131 tedavi etmemize yard\u0131mc\u0131 olabilir.<\/p>\n

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

Kocam\u0131n yan\u0131na KO\u015eAR ve ona kocaman sar\u0131l\u0131rd\u0131m!<\/p>\n

 <\/p>\n

*** LGMD konusunda fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN!<\/p>\n

 <\/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":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1981,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anne - 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\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anne - 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