{"id":4723,"date":"2015-02-24T18:49:40","date_gmt":"2015-02-24T16:49:40","guid":{"rendered":"http:\/\/www.ced.org.tr\/?p=4723"},"modified":"2015-02-24T18:49:40","modified_gmt":"2015-02-24T16:49:40","slug":"sayin-devlet-bir-cocuk-daha-oluyor","status":"publish","type":"post","link":"http:\/\/www.ced.org.tr\/?p=4723","title":{"rendered":"Say\u0131n devlet bir \u00e7ocuk daha \u00f6l\u00fcyor!"},"content":{"rendered":"
Radikal, 21\/01\/2015 07:36<\/p>\n
Haber: \u0130DR\u0130S EMEN<\/div>\n
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SGK taraf\u0131ndan ila\u00e7lar\u0131 kesilen ve \u00fc\u00e7 y\u0131l ila\u00e7 alamad\u0131\u011f\u0131 i\u00e7in \u00f6len 12 ya\u015f\u0131ndaki Beytullah Hakyeri’den sonra 7 ya\u015f\u0131ndaki Ekin Miray’\u0131n da hayat\u0131 tehlikede. Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 ve SGK aras\u0131ndaki b\u00fcrokrasi y\u00fcz\u00fcnden Ekin Miray 6 ayd\u0131r ila\u00e7 alam\u0131yor.<\/div>\n
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\u00a0<\/strong>Mukopolisakkaridoz (MPS) hastal\u0131\u011f\u0131 d\u00fcnyada ender g\u00f6r\u00fclen genetik hastal\u0131klardan biri. Ya\u011f ve \u015feker par\u00e7alayan enzimlere sahip olmad\u0131\u011f\u0131 i\u00e7in MPS hastalar\u0131n\u0131n v\u00fccutlar\u0131 sa\u011fl\u0131kl\u0131 olarak geli\u015femiyor. Buna ba\u011fl\u0131 olarak y\u00fcr\u00fcme ve konu\u015fma gibi fiziksel faaliyetleri yerine getiremiyorlar. Sa\u011fl\u0131kl\u0131 fiziksel geli\u015fim i\u00e7in MPS hastalar\u0131na enzim tedavisi uygulanmas\u0131 \u015fart. 200 binde bir g\u00f6r\u00fclen bu hastal\u0131k T\u00fcrkiye<\/a> \u2019de yakla\u015f\u0131k 250 \u00e7ocukta bulunuyor.<\/p>\n

Gazi \u00dcniversitesi \u00c7ocuk<\/a> Metabolizmas\u0131 b\u00f6l\u00fcm\u00fcnde tedavi g\u00f6ren yedi ya\u015f\u0131ndaki Ekin Miray Y\u0131ld\u0131z\u2019a 2011 y\u0131l\u0131nda MPS T\u0130P 4 te\u015fhisi konuldu. Doktorlar 1 Temmuz 2014 tarihinde bir Vimizim adl\u0131 ilac\u0131 kullanmas\u0131 i\u00e7in Miray ad\u0131na bir re\u00e7ete d\u00fczenledi. Endikasyon d\u0131\u015f\u0131 olan ilac\u0131n yurt d\u0131\u015f\u0131ndan getirtilmesi i\u00e7in Y\u0131ld\u0131z ad\u0131na 2 Temmuz 2014 tarihinde Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 T\u00fcrkiye \u0130la\u00e7 ve T\u0131bbi Cihazlar Kurumu taraf\u0131ndan bir rapor haz\u0131rlanarak SGK\u2019ya g\u00f6nderildi. Ancak Vimizim adl\u0131 ila\u00e7 SGK taraf\u0131ndan \u2018yurtd\u0131\u015f\u0131 \u00f6denecek ila\u00e7lar\u2019 listesine eklenmedi\u011fi i\u00e7in Y\u0131ld\u0131z tam 6 ayd\u0131r ila\u00e7 alam\u0131yor.<\/div>\n","protected":false},"excerpt":{"rendered":"

Radikal, 21\/01\/2015 07:36 Haber: \u0130DR\u0130S EMEN SGK taraf\u0131ndan ila\u00e7lar\u0131 kesilen ve \u00fc\u00e7 y\u0131l ila\u00e7 alamad\u0131\u011f\u0131 i\u00e7in \u00f6len 12 ya\u015f\u0131ndaki Beytullah...<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_monsterinsights_skip_tracking":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[62],"tags":[],"class_list":["post-4723","post","type-post","status-publish","format-standard","hentry","category-sagliktan-haberler"],"aioseo_notices":[],"aioseo_head":"\n\t\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\t\n\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t\n\t\t