{"id":6,"date":"2023-09-25T17:03:15","date_gmt":"2023-09-25T17:03:15","guid":{"rendered":"https:\/\/achdsepatient-dev-001.azurewebsites.net\/tr-tr\/hikayemoteyegeciyor\/?page_id=6"},"modified":"2023-12-14T00:08:06","modified_gmt":"2023-12-14T00:08:06","slug":"benim-hikayem-ve-otesi-biomarin","status":"publish","type":"page","link":"https:\/\/achondroplasia.biomarin.com\/tr-tr\/hikayemoteyegeciyor\/","title":{"rendered":"Home"},"content":{"rendered":"
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AKONDROPLAZI\u0307L\u0130 B\u0130REYLER\u0130N HAYAT H\u0130KAYELER\u0130 G\u00d6R\u00dcNEN\u0130N \u00d6TESI\u0307NDE<\/span><\/h2>\n

Akondroplazi her y\u0131l do\u011fan 25.000 \u00e7ocuktan birinin b\u00fcy\u00fcmesini etkileyen genetik hastal\u0131k olan boy k\u0131sal\u0131\u011f\u0131n\u0131n en yayg\u0131n t\u00fcr\u00fcd\u00fcr*. En \u00e7ok bilinen \u00f6zelli\u011fi ise boy k\u0131sal\u0131\u011f\u0131 ve uzuvlar aras\u0131ndaki orant\u0131s\u0131zl\u0131kt\u0131r. Ancak bu durum bunun \u00e7ok \u00f6tesine ge\u00e7erek hidrosefali, servikomed\u00fcller kompresyon, kas g\u00fcc\u00fc kayb\u0131, i\u015fitme ve solunum sistemi fonksiyonlar\u0131nda de\u011fi\u015fiklikler, kifoz, kas g\u00fcc\u00fcnde azalma, obezite gibi di\u011fer sa\u011fl\u0131k sorunlar\u0131n\u0131 i\u00e7erir*. Her t\u00fcrl\u00fc bilgiye eri\u015fimin m\u00fcmk\u00fcn olmas\u0131na ra\u011fmen akondroplazili bireylerin g\u00fcnl\u00fck ya\u015famlar\u0131n\u0131 iyile\u015ftirmek i\u00e7in hala \u00e7ok mesafeler katedilmesi gerekiyor. Onlar\u0131n hikayelerini bilmek de bu d\u00f6n\u00fc\u015f\u00fcm\u00fcn \u00f6nemli bir par\u00e7as\u0131 olacakt\u0131r.<\/span><\/p>\n

Daha fazla bilgi i\u00e7in t\u0131kla<\/a><\/p>\n <\/div>\n \n

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GER\u00c7EK B\u0130R H\u0130KAYEYE DAYANAN KAMPANYA<\/h2>\n

Liz hayalperest k\u00fc\u00e7\u00fck bir k\u0131zd\u0131r. En b\u00fcy\u00fck hayali \u00e7izimlerinin \u00f6zellikle de hayali k\u00f6pe\u011fi Hakuna\u2019n\u0131n ger\u00e7e\u011fe d\u00f6n\u00fc\u015ft\u00fc\u011f\u00fcn\u00fc g\u00f6rmesidir. Bu videoyu izleyip akondroplazinin minik Liz\u2019in hayat\u0131n\u0131 nas\u0131l etkiledi\u011fini, Hakuna\u2019n\u0131n onun nas\u0131l daha \u00f6teye ta\u015f\u0131mas\u0131na yard\u0131mc\u0131 oldu\u011funa \u015fahit olun.<\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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BU \u00d6YK\u00dcDE SEN DE OLAB\u0130L\u0130RS\u0130N<\/h2>\n

Ki\u015fiselle\u015ftirilmi\u015f dijital kitaptan videolu hikayeye yolculuk etmeye ne dersiniz? Inside the Story platformuna girip kampanyay\u0131 payla\u015fmak ve daha fazla akondroplaziden haberdar olmak i\u00e7in ana karakteri ki\u015fiselle\u015ftirebilirsin.<\/p>\n

Dijital Kitab\u0131n\u0131 olu\u015ftur<\/a><\/p>\n <\/div>\n \n

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Kaynak\u00e7a:
\n* Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet. 2014;7:117-125. Published online June 24, 2014<\/p>\n

Wynn J, King TM, Gambello MJ, Waller DK, Hecht JT. Mortality in achondroplasia study: a 42-year follow-up. Am J Med Genet A. 2007 Nov 1;143A(21):2502-11<\/p>\n

Pauli RM. Achondroplasia: a comprehensive clinical review. Orphanet J Rare Dis. 2019;14(1):1.<\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-6","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nHome - Benim Hikayem ve \u00d6tesi - BioMarin<\/title>\n<meta name=\"description\" content=\"C\u00fcceli\u011fin en yayg\u0131n t\u00fcr\u00fc akondroplazi\u2019yi hi\u00e7 duydunuz mu?Boy k\u0131sal\u0131\u011f\u0131ndan \u00f6te olan bu hastal\u0131kla ilgili fark\u0131ndal\u0131\u011f\u0131 artt\u0131rmay\u0131 ama\u00e7layan yepyeni animasyon videomuzla onu yak\u0131ndan tan\u0131yabilirsiniz.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/achondroplasia.biomarin.com\/tr-tr\/hikayemoteyegeciyor\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Benim Hikayem ve \u00d6tesi- BioMarin\" \/>\n<meta property=\"og:description\" content=\"C\u00fcceli\u011fin en yayg\u0131n t\u00fcr\u00fc akondroplazi\u2019yi hi\u00e7 duydunuz mu?Boy k\u0131sal\u0131\u011f\u0131ndan \u00f6te olan bu hastal\u0131kla ilgili fark\u0131ndal\u0131\u011f\u0131 artt\u0131rmay\u0131 ama\u00e7layan yepyeni animasyon videomuzla onu yak\u0131ndan tan\u0131yabilirsiniz.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/achondroplasia.biomarin.com\/tr-tr\/hikayemoteyegeciyor\/\" \/>\n<meta property=\"og:site_name\" content=\"Benim Hikayem ve \u00d6tesi - 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