{"id":31911,"date":"2024-02-29T22:44:51","date_gmt":"2024-02-29T22:44:51","guid":{"rendered":"https:\/\/kibrisdakik.com\/index.php\/2024\/02\/29\/dincyurekulkemizde-var-olan-veri-kaynaklari-incelendiginde-142-cesit-nadir-hastalik-saptanmistir\/"},"modified":"2024-02-29T22:44:51","modified_gmt":"2024-02-29T22:44:51","slug":"dincyurekulkemizde-var-olan-veri-kaynaklari-incelendiginde-142-cesit-nadir-hastalik-saptanmistir","status":"publish","type":"post","link":"https:\/\/kibrisdakik.com\/?p=31911","title":{"rendered":"Din\u00e7y\u00fcrek:\u00dclkemizde var olan veri kaynaklar\u0131 incelendi\u011finde 142 \u00e7e\u015fit nadir hastal\u0131k saptanm\u0131\u015ft\u0131r"},"content":{"rendered":"

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Sa\u011fl\u0131k Bakan\u0131 Dr. Hakan Din\u00e7y\u00fcrek, Nadir Hastal\u0131klar G\u00fcn\u00fc nedeniyle a\u00e7\u0131klamalarda bulundu.<\/p>\n

Ender veya bilinmeyen hastal\u0131klarla ilgili dikkat \u00e7ekmek amac\u0131yla Avrupa Nadir Hastal\u0131klar Birli\u011finin (EURO<\/a>RDIS) \u00f6nc\u00fcl\u00fc\u011f\u00fcnde her d\u00f6rt y\u0131lda bir g\u00f6r\u00fclen nadir g\u00fcn olan 29 \u015eubat, 2008 y\u0131l\u0131ndan itibaren \u201cfark\u0131ndal\u0131k\u201d g\u00fcn\u00fc olarak belirlendi\u011fini kaydeden Din\u00e7y\u00fcrek, \u00a0bu tarihten itibaren \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fcn\u00fcn \u2018Nadir Hastal\u0131klar G\u00fcn\u00fc\u2019 olarak kabul edildi\u011fini s\u00f6yledi. <\/p>\n

\u201d \u00dclkemizde 142 \u00e7e\u015fit nadir hastal\u0131k saptanm\u0131\u015ft\u0131r\u201d <\/em><\/p>\n

Din\u00e7y\u00fcrek, \u00fclkemizde ula\u015f\u0131labilen veriler toplanm\u0131\u015ft\u0131r. Bu konuda epidemiyolojik \u00e7al\u0131\u015fma yap\u0131labilmesi i\u00e7in veri taban\u0131 olu\u015fturulmu\u015ftur. \u00dclkemizde var olan veri kaynaklar\u0131 incelendi\u011finde 142 \u00e7e\u015fit nadir hastal\u0131k saptanm\u0131\u015ft\u0131r. S\u00f6z\u00fc edilen 142 \u00e7e\u015fit nadir hastal\u0131klardan 208 ki\u015fi te\u015fhis alm\u0131\u015ft\u0131r. Epidemiyolojik haritaland\u0131rma yap\u0131ld\u0131ktan sonra alan\u0131nda uzman ki\u015filerden olu\u015fan bir ekiple nadir hastal\u0131klar hususunda strateji ve eylem plan\u0131 haz\u0131rlanacakt\u0131r. Lefko\u015fa Burhan Nalbanto\u011flu Devlet Hastanesindeki Genetik Laboratuvar\u0131 alt yap\u0131 hizmetleri ve nadir hastal\u0131klar ile ilgili test kitleriyle g\u00fc\u00e7lendirilmi\u015f olup uzmanlar\u0131n g\u00f6r\u00fc\u015fleri do\u011frultusunda gerekli eklemeler yap\u0131lmaya devam etmektedir ifadesinde bulundu.<\/p>\n

Nadir hastal\u0131klar\u0131n tan\u0131s\u0131 ve izleminin bir\u00e7ok alan\u0131n i\u015f birli\u011fi i\u00e7inde \u00e7al\u0131\u015fmas\u0131n\u0131 gerektirdi\u011fini ve bir ekip i\u015fi oldu\u011funu vurgulayan Din\u00e7y\u00fcrek, her birey \u00f6zel ve \u00f6nemlidir dedi.<\/p>\n

Din\u00e7y\u00fcrek, yap\u0131lan \u00e7al\u0131\u015fmaya katk\u0131 koyan Dr. Burhan Nalbanto\u011flu Devlet Hastanesi Geli\u015fimsel Pediatri Yan Dal Uzman\u0131 Uzm. Dr. Do\u011fa Ceren Polat ve Yak\u0131n Do\u011fu \u00dcniversitesi, T\u0131bbi Genetik Anabilim Dal\u0131 \u00d6\u011fretim \u00dcyesi, Molek\u00fcler T\u0131p Laboratuvarlar\u0131 Sorumlusu Do\u00e7. Dr. Mahmut \u00c7erkez Erg\u00f6ren\u2019e te\u015fekk\u00fcr etti.\u00a0<\/p>\n

\u201cToplumda her 2,000 ki\u015fide 1\u2019den az g\u00f6r\u00fclen hastal\u0131klar \u201cNadir Hastal\u0131klar\u201d olarak tan\u0131mlanmaktad\u0131r. \u00a0\u201cNadir Hastal\u0131klar\u0131n\u201d d\u00fcnyada 470 milyondan fazla ki\u015fiyi ve toplumlar\u0131n ise%5 ile %8\u2019ini etkiledi\u011fi d\u00fc\u015f\u00fcn\u00fclmektedir. S\u0131n\u0131fland\u0131rma y\u00f6ntemine g\u00f6re farkl\u0131l\u0131klar mevcut olmakla birlikte t\u0131p literat\u00fcr\u00fcnde yakla\u015f\u0131k 8,000 nadir hastal\u0131k tan\u0131mlanm\u0131\u015ft\u0131r ve % 80\u2019i genetik k\u00f6kenlidir.<\/p>\n

Nadir hastal\u0131klar\u0131n %70\u2019i \u00e7ocukluk d\u00f6neminde ba\u015flamaktad\u0131r. Bilindi\u011fi \u00fczere do\u011fumdan ba\u015flayarak bebekler \u00e7ocuk hekimleri taraf\u0131ndan rutin olarak takip edilmektedir. D\u00fczenli izlem ve muayene erken tan\u0131 a\u00e7\u0131s\u0131ndan \u00e7ok \u00f6nemli ve gereklidir. Pek \u00e7ok nadir g\u00f6r\u00fclen hastal\u0131\u011fa geli\u015fimsel sorunlar da e\u015flik etmektedir. Nadir g\u00f6r\u00fclen hastal\u0131klara ve e\u015flik eden geli\u015fimsel sorunlara erken tan\u0131 konulmas\u0131 desteklerin en k\u0131sa s\u00fcrede ba\u015flanmas\u0131n\u0131 sa\u011flar; bu nedenle t\u00fcm sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131 ve ailelerin nadir hastal\u0131klar konusunda bilin\u00e7lendirilmesi ve fark\u0131ndal\u0131k yarat\u0131lmas\u0131 b\u00fcy\u00fck \u00f6nem ta\u015f\u0131maktad\u0131r. \u00dclkemizde \u00c7ocuk Sa\u011fl\u0131\u011f\u0131 ve Hastal\u0131klar\u0131 Yan Dal Uzmanlar\u0131n\u0131n say\u0131s\u0131ndaki art\u0131\u015f da nadir hastal\u0131\u011f\u0131 olan \u00e7ocuklar\u0131n erken tan\u0131 almas\u0131 ve tedavi s\u00fcre\u00e7lerinin y\u00f6netilmesi a\u00e7\u0131s\u0131ndan \u00e7ok de\u011ferlidir. Erken tan\u0131 ile tedavi ve desteklerin erken ba\u015flanmas\u0131 \u00e7ocuklar\u0131n kendi geli\u015fimsel potansiyellerine ula\u015fabilmeleri, i\u015flevselliklerinin ve hayata kat\u0131l\u0131mlar\u0131n\u0131n artmas\u0131n\u0131 sa\u011flayarak \u00e7ocuk, aile ve toplumsal d\u00fczeyde fayda sa\u011flamaktad\u0131r.<\/p>\n

Nadir hastal\u0131klar\u0131n tan\u0131s\u0131n\u0131 koymak zorlu ve uzun bir s\u00fcre\u00e7 olabilmektedir. Yeti\u015fmi\u015f uzman hekimlerin, tan\u0131 ve tedavi merkezlerinin az say\u0131da olmas\u0131ndan \u00f6t\u00fcr\u00fc tan\u0131 ve tedavi s\u00fcreci ile ilgili zorluklar ya\u015fanmakta; bu nedenle nadir hastal\u0131klarda mortalite ve morbiditenin y\u00fcksek oldu\u011fu g\u00f6zlemlenmektedir.<\/p>\n

D\u00fcnya Sa\u011fl\u0131k \u00d6rg\u00fct\u00fc ve Avrupa Birli\u011fi gibi bir\u00e7ok enternasyonal birlik ve ulusal sa\u011fl\u0131k otoritesi nadir hastal\u0131klarla ilgili sa\u011fl\u0131k personeli yeti\u015ftirip tan\u0131 \u2013 tedavi \u2013 ara\u015ft\u0131rma merkezi kurulmas\u0131 y\u00f6n\u00fcnde stratejik ad\u0131mlar atm\u0131\u015ft\u0131r. Bu yolda epidemiyolojik \u00e7al\u0131\u015fmalar i\u00e7in veri tabanlar\u0131 kurulmu\u015f, yeni tedavilerin yap\u0131labilmesine y\u00f6nelik ara\u015ft\u0131rma ve finansman geli\u015ftirilmesi y\u00f6n\u00fcnde \u00e7al\u0131\u015fmalara, risk gruplar\u0131n\u0131n taranmas\u0131na ve yetim ila\u00e7lar\u0131n geli\u015ftirilmesi konusuna \u00f6nem verilmeye ba\u015flanm\u0131\u015ft\u0131r.<\/p>\n

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