{"id":7955,"date":"2023-05-31T13:05:35","date_gmt":"2023-05-31T13:05:35","guid":{"rendered":"https:\/\/kibrisdakik.com\/index.php\/2023\/05\/31\/nadir-gorulen-hastaliklar-agi-fetilketonuri-diger-ulkelerdeki-gibi-ucretsiz-olarak-devlet-tarafindan-yeni-dogan-taramasi-kapsamina-alinmali\/"},"modified":"2023-05-31T13:05:35","modified_gmt":"2023-05-31T13:05:35","slug":"nadir-gorulen-hastaliklar-agi-fetilketonuri-diger-ulkelerdeki-gibi-ucretsiz-olarak-devlet-tarafindan-yeni-dogan-taramasi-kapsamina-alinmali","status":"publish","type":"post","link":"https:\/\/kibrisdakik.com\/?p=7955","title":{"rendered":"Nadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131: \u201cFetilketon\u00fcri, di\u011fer \u00fclkelerdeki gibi \u00fccretsiz olarak devlet taraf\u0131ndan yeni do\u011fan taramas\u0131 kapsam\u0131na al\u0131nmal\u0131\u201d"},"content":{"rendered":"

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\nNadir G\u00f6r\u00fclen Hastal\u0131klar A\u011f\u0131 (NGHA), Kuzey K\u0131br\u0131s\u2019ta g\u00f6r\u00fclme s\u0131kl\u0131\u011f\u0131 y\u00fczde 2,5 olan, nadir bir hastal\u0131k olan Fetilketon\u00fcri\u2019nin, di\u011fer \u00fclkelerdeki gibi \u00fccretsiz olarak devlet taraf\u0131ndan yeni do\u011fan taramas\u0131 kapsam\u0131na al\u0131nmas\u0131 gerekti\u011fini vurgulad\u0131.<\/p>\n

NGHA, 1 Haziran Uluslararas\u0131 D\u00fcnya Fetilketon\u00fcri g\u00fcn\u00fc nedeniyle yapt\u0131\u011f\u0131 yaz\u0131l\u0131 a\u00e7\u0131klamada, hastal\u0131ktan muzdarip ki\u015filerin NGHA\u2019a \u00fcye olarak seslerini duyurabileceklerine i\u015faret edildi.<\/p>\n

Fenilketon\u00fcri\u2019nin, PKU ve otozomal resesif olarak an\u0131lan kal\u0131tsal bir hastal\u0131k oldu\u011fu belirtilen a\u00e7\u0131klamada, Fenilketon\u00fcri\u2019nin kanda fenilalanin ad\u0131 verilen madde seviyesinin y\u00fckselmesiyle ortaya \u00e7\u0131kt\u0131\u011f\u0131 ve tedavi edilmemesi durumunda, fenilalanin v\u00fccutta zararl\u0131 seviyelere \u00e7\u0131kmas\u0131na, bu durumun da hastalarda zihinsel engellili\u011fe ve di\u011fer ciddi sa\u011fl\u0131k sorunlar\u0131na neden oldu\u011fu kaydedildi.<\/p>\n

T\u00fcm d\u00fcnyada devlet taraf\u0131ndan \u00fccretsiz olarak yeni do\u011fan \u00e7ocuk taramas\u0131nda bulunan hastal\u0131\u011f\u0131n, Kuzey K\u0131br\u0131s\u2019ta ailelerin insiyatifine b\u0131rak\u0131ld\u0131\u011f\u0131n\u0131 ve \u00fccretli olarak yurtd\u0131\u015f\u0131na g\u00f6nderilerek yap\u0131ld\u0131\u011f\u0131 ifade edilen a\u00e7\u0131klamada, hasta yak\u0131nlar\u0131n\u0131n te\u015fhis ve tedavi i\u00e7in uzman doktor bulamad\u0131klar\u0131n\u0131, hastal\u0131\u011fa \u00f6zg\u00fc tetkikler i\u00e7in yurt d\u0131\u015f\u0131na gitmek zorunda b\u0131rak\u0131ld\u0131klar\u0131 kaydedildi.<\/p>\n

Hastalar\u0131n d\u00fczenli yapmak zorunda oldu\u011fu Fenilalalin ve trozin tahlillerinin de Kuzey K\u0131br\u0131s\u2019ta yap\u0131lamad\u0131\u011f\u0131na dikkat \u00e7ekilen a\u00e7\u0131klamada, hastalar\u0131n bu nedenle yurtd\u0131\u015f\u0131na gitmek zorunda olduklar\u0131n\u0131, bunun da maddi ve manevi olarak y\u0131prat\u0131c\u0131 oldu\u011fu belirtildi.<\/p>\n

A\u00e7\u0131klamada \u015fu ifadelere yer verildi:<\/p>\n

\u201cNadir g\u00f6r\u00fclen hastal\u0131\u011fa sahipseniz, yak\u0131nlar\u0131n\u0131z nadir hastal\u0131ktan dolay\u0131 te\u015fhis, tetkik ve tedavilerinde s\u0131k\u0131nt\u0131 ya\u015f\u0131yorsa veya nadir g\u00f6r\u00fclen bir hastal\u0131kla m\u00fccadele eden, ara\u015ft\u0131rma yapan bir kurum ve kurulu\u015f iseniz, sizleri a\u011fa kat\u0131lmaya ve destek vermeye davet ederiz.\u201d<\/p>\n

A\u00e7\u0131klamada, destek vermek ve daha fazla bilgi almak isteyenlerin nadirgorulenhastaliklaragi@gmail.com adresine veya 0392 228 83 37 numaral\u0131 telefondan Evrensel Hasta Haklar\u0131 Derne\u011fi\u2019ne ula\u015fabilecekleri belirtildi.<\/p>\n<\/p><\/div>\n