{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Siri"},"content":{"rendered":"

11\/06\/2015<\/strong><\/p>\n

\u0130S\u0130M<\/strong>: Siri\u00a0 YA\u015e<\/strong>: 28 yrs. old<\/p>\n

\u00dcLKE<\/strong>: Norve\u00e7<\/p>\n

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

 <\/p>\n

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

Bana 26 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n

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

A\u00e7\u0131klanamayan yorgunluk ya\u015famaya 16 ya\u015f\u0131nda ba\u015flad\u0131m. 19 ya\u015f\u0131mdayken, elimi aya\u011f\u0131ma koymakta zorland\u0131\u011f\u0131m\u0131 fark ettim.<\/p>\n

Sa\u011f kolumu ba\u015f\u0131m\u0131n \u00fczerine koyuyorum. 20'li ya\u015flar\u0131m\u0131n ba\u015f\u0131nda topuk kordonlar\u0131m beni rahats\u0131z etmeye ba\u015flad\u0131, \u00e7ok s\u0131k\u0131yd\u0131. Birka\u00e7 y\u0131l sonra<\/p>\n

Daha sonra merdivenlerle ve al\u00e7ak koltuklarla m\u00fccadele etmeye ba\u015flad\u0131m ve art\u0131k ko\u015fam\u0131yor ya da z\u0131playam\u0131yordum.<\/p>\n

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

Hay\u0131r, LGMD2A'l\u0131 tek aile \u00fcyesi 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

\u0130nsanlar\u0131n kan\u0131ksad\u0131\u011f\u0131 g\u00fcndelik i\u015fler baz\u0131 g\u00fcnler beni ger\u00e7ekten sinirlendiriyor. Arabadan inmek gibi.<\/p>\n

sandalye, yatakta d\u00f6nmek veya ayakkab\u0131lar\u0131m\u0131 ba\u011flamak - t\u00fcm bu k\u00fc\u00e7\u00fck \u015feyler beni yoruyor ve bo\u015fa zaman harcamaktan ho\u015flanm\u0131yorum<\/p>\n

enerji harc\u0131yorum. Ancak as\u0131l m\u00fccadele, engelli olman\u0131n getirdi\u011fi t\u00fcm ekstra i\u015flerdir. \u0130nsanlar t\u00fcm bunlar\u0131 g\u00f6rm\u00fcyor<\/p>\n

\u0130htiyac\u0131m olan \u015feyleri almak ve haklar\u0131m\u0131, fizyoterapimi, doktor randevular\u0131m\u0131 vb. belirlemek i\u00e7in evrak i\u015fleriyle ge\u00e7irdi\u011fim saatler ya da bir g\u00fcn a\u015f\u0131r\u0131ya ka\u00e7t\u0131\u011f\u0131m i\u00e7in dinlenerek \"bo\u015fa harcad\u0131\u011f\u0131m\" onca zaman. Di\u011fer insanlara ba\u011f\u0131ml\u0131 olmak da zorlay\u0131c\u0131 bir durum.<\/p>\n

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

\u00dcniversitede 6 y\u0131l\u0131m\u0131 tamamlad\u0131m ve \u00f6\u011fretmenlik diplomam\u0131 ald\u0131m. Ayr\u0131ca bir\u00e7ok farkl\u0131 \u00fclkeyi ziyaret ettim.<\/p>\n

\u00fclkelere gittim ve zorluklar\u0131ma ra\u011fmen \u00e7e\u015fitli da\u011flarda y\u00fcr\u00fcy\u00fc\u015f yapt\u0131m.<\/p>\n

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

Bana hi\u00e7bir \u015feyi hafife almamay\u0131 \u00f6\u011fretti. Beni daha al\u00e7akg\u00f6n\u00fcll\u00fc ve hayattaki t\u00fcm k\u00fc\u00e7\u00fck \u015feyler i\u00e7in minnettar yapt\u0131. Bana yava\u015flamay\u0131, daha sab\u0131rl\u0131 olmay\u0131 ve k\u00fc\u00e7\u00fck g\u00f6revler i\u00e7in yard\u0131m istemeye cesaret etmeyi \u00f6\u011fretti. Ve her g\u00fcn\u00fcn tad\u0131n\u0131 \u00e7\u0131karmay\u0131! Ayn\u0131 zamanda daha yarat\u0131c\u0131 olmam\u0131 sa\u011flad\u0131, \u00e7\u00fcnk\u00fc bir \u015feyler yapmak i\u00e7in yeni yollar bulmam gerekiyor. Ve pek \u00e7ok yeni arkada\u015f edindim! Buna bay\u0131l\u0131yorum.<\/p>\n

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

Ger\u00e7ekten var olmas\u0131 iyi bir ba\u015flang\u0131\u00e7! Ve insanlar\u0131 farkl\u0131 \u015fekillerde etkiledi\u011fini, ancak \u00e7o\u011fumuz i\u00e7in<\/p>\n

Zaman i\u00e7inde yeteneklerini kaybetmek s\u00fcper sinir bozucu\/depresif. Her zaman bununla u\u011fra\u015f\u0131yoruz, \u00e7\u00fcnk\u00fc bu bir<\/p>\n

ilerleyen bir hastal\u0131k. Bu devam eden bir keder. Ve sevdiklerimizi de etkiliyor. Her zaman nazik olun.<\/p>\n

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

Ko\u015fard\u0131m! Ve her yerde z\u0131plard\u0131m. Ve b\u00fct\u00fcn gece dans ederdim! Ve arkada\u015flar\u0131ma hareket etmeleri i\u00e7in yard\u0131m ederdim, haha \ud83d\ude09<\/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<\/p>\n

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

11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD […]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Siri<\/title>\n<meta name=\"description\" content=\"Siri, 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\/11\/06\/siri\/\" \/>\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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