{"id":5372,"date":"2021-07-11T21:37:18","date_gmt":"2021-07-11T21:37:18","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5372"},"modified":"2024-02-09T14:24:04","modified_gmt":"2024-02-09T14:24:04","slug":"individual-with-lgmd-lena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/07\/11\/individual-with-lgmd-lena\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Lena"},"content":{"rendered":"

\"Lgmd2j<\/p>\n

\u0130sim<\/strong>: Lena\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Ya\u015f<\/strong>: \u00a044<\/p>\n

\u00dclke<\/strong>: ABD<\/p>\n

LGMD Alt Tipi<\/strong>: Limb-Girdle Musk\u00fcler Distrofi tip 2J\/R10 Titan ile ili\u015fkili<\/p>\n

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

Bana 42 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

Bir okul \u00f6ncesi \u00f6\u011fretmeni olarak, yerden kalkman\u0131n \u00e7ok zorla\u015ft\u0131\u011f\u0131n\u0131 fark ettim. Sonra d\u00fc\u015fmeye ve dengemi kaybetmeye ba\u015flad\u0131m.<\/p>\n

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

K\u0131z karde\u015fime ve bana LGMD alt tip 2J te\u015fhisi konuldu, ayr\u0131ca babam\u0131z\u0131n ve t\u00fcm amcalar\u0131m\u0131z\u0131n da bu hastal\u0131\u011fa sahip olabilece\u011fini d\u00fc\u015f\u00fcn\u00fcyoruz. (Hepsi vefat etti ve hi\u00e7birine te\u015fhis konulmad\u0131).<\/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

Yapmak istedi\u011fim t\u00fcm fiziksel aktiviteleri yapamamak. Gelece\u011fin belirsizli\u011fi ve \u00e7ocuklar\u0131m\u0131n da LGMD geli\u015ftirip geli\u015ftirmeyece\u011fi. Kar\u015f\u0131la\u015ft\u0131\u011f\u0131m bir di\u011fer zorluk da bacaklar\u0131m\u0131n ve uzuvlar\u0131m\u0131n giderek zay\u0131flamas\u0131yla duygusal olarak ba\u015fa \u00e7\u0131kmak.<\/p>\n

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

Bir anne ve e\u015f olmaktan gurur duyuyorum. Ayr\u0131ca bir topluluk sosyal grubunda aktif olmaktan, \"Rock The Vote \"a kat\u0131lmaktan ve d\u00fcnyan\u0131n her yerinden insanlarla tan\u0131\u015fmak i\u00e7in sosyal medyay\u0131 nas\u0131l kullanaca\u011f\u0131m\u0131 \u00f6\u011frenmekten gurur duyuyorum.<\/p>\n

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

Sa\u011fl\u0131\u011f\u0131m i\u00e7in daha fazla savunucuyum. Kendime ve ba\u015fkalar\u0131na yard\u0131mc\u0131 olacak sorular sorma ve eylemlerde bulunma konusunda daha g\u00fc\u00e7l\u00fcy\u00fcm, aksi takdirde belki de g\u00f6rmezden gelinecek veya g\u00f6z ard\u0131 edilecek.<\/p>\n

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

LGMD ile hala sevebilir, g\u00fclebilir ve anlaml\u0131 bir hayat ya\u015fayabilirsiniz. V\u00fccudumuzun fiziksel s\u0131n\u0131rlamalar\u0131, \u00f6\u011frenmeye ve d\u00fcnyay\u0131 deneyimlemeye devam etmemizi engellemez.<\/p>\n

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

E\u011fer yar\u0131n iyile\u015febilseydim, sahile gider ve ayak parmaklar\u0131m\u0131 okyanusta oynat\u0131rd\u0131m!!!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5373,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,78],"class_list":["post-5372","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Lena - 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\/2021\/07\/11\/individual-with-lgmd-lena\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Lena - 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