{"id":53889,"date":"2026-02-28T22:45:10","date_gmt":"2026-02-28T22:45:10","guid":{"rendered":"https:\/\/bihavadis.com\/?p=53889"},"modified":"2026-02-28T22:45:10","modified_gmt":"2026-02-28T22:45:10","slug":"nadir-hastaliklar-gunu-teshisi-yillar-aliyor","status":"publish","type":"post","link":"https:\/\/bihavadis.com\/index.php\/2026\/02\/28\/nadir-hastaliklar-gunu-teshisi-yillar-aliyor\/","title":{"rendered":"Nadir Hastal\u0131klar G\u00fcn\u00fc Te\u015fhisi Y\u0131llar Al\u0131yor!"},"content":{"rendered":"

Toplumda 2 binde 1\u2019den daha az insanda g\u00f6r\u00fclen hastal\u0131klar \u2018Nadir hastal\u0131klar\u2019 olarak kabul ediliyor. Her y\u0131l \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fc Nadir Hastal\u0131klar G\u00fcn\u00fc olarak kabul edilirken T\u00fcrk Toraks Derne\u011fi nadir akci\u011fer hastal\u0131klar\u0131na da dikkat \u00e7ekti. T\u00fcrk Toraks Derne\u011fi Klinik Sorunlar \u00c7al\u0131\u015fma Grubu \u00dcyesi Dr. Nazl\u0131 \u00c7etin, \u201cNadir hastal\u0131klar, toplumda iki binde birden az s\u0131kl\u0131kla g\u00f6r\u00fclen hastal\u0131klar\u0131 ifade eder. S\u0131n\u0131fland\u0131rma y\u00f6ntemlerine g\u00f6re farkl\u0131l\u0131k g\u00f6stermekle birlikte literat\u00fcrde yakla\u015f\u0131k sekiz bin farkl\u0131 nadir hastal\u0131k tan\u0131mlanm\u0131\u015ft\u0131r. Bilimsel literat\u00fcre g\u00f6re toplumun y\u00fczde 5 ila 8\u2019i aras\u0131nda bir oranda nadir hastal\u0131klardan birine sahip oldu\u011fu, \u00fclkemizde ise yakla\u015f\u0131k 5 ila 6,4 milyon aras\u0131nda insan\u0131n bu hastal\u0131klardan etkilendi\u011fi \u00f6ng\u00f6r\u00fclmektedir. \u201cNadirin nadiri (ultra-nadir)\u201d olarak adland\u0131r\u0131lan hastal\u0131klar ise \u00e7ok daha seyrek g\u00f6r\u00fcl\u00fcr ve bu durum hem tan\u0131 yolunu hem de tedaviye eri\u015fimi daha da zorla\u015ft\u0131rabilir\u201d dedi.\u00a0<\/span><\/p>\n

<\/p>\n

Nadir hastal\u0131klarda te\u015fhis uzun s\u00fcrebilir<\/b><\/p>\n

Nadir akci\u011fer hastal\u0131klar\u0131n\u0131n yaln\u0131zca \u00e7ocukluk \u00e7a\u011f\u0131nda ortaya \u00e7\u0131kmad\u0131\u011f\u0131n\u0131, yeti\u015fkinlikte de g\u00f6r\u00fcld\u00fc\u011f\u00fcn\u00fc belirten Dr. \u00c7etin \u015funlar\u0131 s\u00f6yledi: \u201cNadir hastal\u0131klar\u0131n bir k\u0131sm\u0131 \u00e7ocukluk d\u00f6neminde izlenebilse de, \u00f6nemli bir b\u00f6l\u00fcm\u00fc eri\u015fkin ya\u015fta ba\u015flar veya eri\u015fkin d\u00f6nemde tan\u0131 al\u0131r. Nadir interstisyel akci\u011fer hastal\u0131klar\u0131 ve nadir kistik akci\u011fer hastal\u0131klar\u0131 bu a\u00e7\u0131dan dikkat \u00e7ekici \u00f6rneklerdir. Eri\u015fkin d\u00f6nemde g\u00f6r\u00fclebilen pulmoner arteriyel hipertansiyon, idiopatik pulmoner fibrosis, pulmoner alveoler proteinozis (PAP), pulmoner alveoler mikrolitiyazis (PAM), pl\u00f6roparankimal fibroelastoz (PPFE), lenfanjiyomiyomatozis (LAM), Birt\u2013Hogg\u2013Dub\u00e9 sendromu, telomer ili\u015fkili fibrozis ve di\u011fer genetik\/nadir alt tipler, do\u011fru zamanda do\u011fru uzmana y\u00f6nlendirme ihtiyac\u0131n\u0131 art\u0131ran klinik tablolar aras\u0131ndad\u0131r. Ne yaz\u0131k ki nadir akci\u011fer hastal\u0131klar\u0131nda en b\u00fcy\u00fck sorunlardan biri, tan\u0131ya giden yolun uzun ve yorucu olabilmesidir. Belirtiler \u00e7o\u011fu zaman \u00f6zg\u00fcl de\u011fildir; klinik seyir ki\u015fiden ki\u015fiye de\u011fi\u015febilir ve hastal\u0131klar ba\u015flang\u0131\u00e7ta daha s\u0131k g\u00f6r\u00fclen hastal\u0131klar\u0131 taklit edebilir. Bu nedenle hastalar, tan\u0131 almadan \u00f6nce farkl\u0131 bran\u015flara ba\u015fvurabilir, tekrarlayan tetkikler yapt\u0131rabilir ve zaman kaybedebilir. Tan\u0131sal s\u00fcre\u00e7 \u00e7o\u011fu zaman ileri g\u00f6r\u00fcnt\u00fcleme, \u00f6zg\u00fcl laboratuvar testleri, patoloji ve multidisipliner de\u011ferlendirme gerektirir; bu olanaklar her merkezde ayn\u0131 d\u00fczeyde bulunmayabilir. Uzman merkezlere ula\u015f\u0131m g\u00fc\u00e7l\u00fc\u011f\u00fc ve sevk s\u00fcre\u00e7lerindeki gecikmeler, tan\u0131 s\u00fcresini uzatabilir.\u201d<\/span><\/p>\n

Nadir hastal\u0131klarda tan\u0131 konulduktan zorluklar devam ediyor<\/b><\/p>\n

Dr. \u00c7etin, tan\u0131 konulduktan sonra da zorluklar\u0131n devam etti\u011fini belirterek, \u201cBaz\u0131 hastal\u0131klarda hedefe y\u00f6nelik tedaviler s\u0131n\u0131rl\u0131d\u0131r. Baz\u0131 tedavilere eri\u015fim ise ruhsat, geri \u00f6deme, uygulama altyap\u0131s\u0131 ve merkez deneyimi gibi nedenlerle g\u00fc\u00e7le\u015febilir. Kronik izlem ihtiyac\u0131, hastal\u0131\u011f\u0131n belirsiz seyri, i\u015f g\u00fcc\u00fc kayb\u0131 ve artan psikososyal y\u00fck, hem hasta hem aile hem de sa\u011fl\u0131k ekibi i\u00e7in \u00f6nemli bir y\u00fck olu\u015fturur. Bu zorlu yolculukta hekimler de hastalar\u0131yla birlikte yo\u011fun bir m\u00fccadele verir. Nadir g\u00f6r\u00fclmeleri nedeniyle g\u00fcnl\u00fck pratikte s\u0131k kar\u015f\u0131la\u015f\u0131lmayan bu hastal\u0131klarda e\u011fitim ve deneyim eksikli\u011fi ortaya \u00e7\u0131kabilir. Do\u011fru y\u00f6nlendirme, uygun tan\u0131sal algoritman\u0131n se\u00e7ilmesi ve deneyimli merkezlerle ileti\u015fim kurulmas\u0131 \u00f6zel \u00f6nem ta\u015f\u0131r. Hekimin do\u011fru zamanda \u2018nadir hastal\u0131k olabilir\u2019 \u015f\u00fcphesi geli\u015ftirmesi ve hastay\u0131 uygun merkeze y\u00f6nlendirmesi, tan\u0131 gecikmesini azaltan kritik bir ad\u0131md\u0131r. Dolay\u0131s\u0131yla nadir akci\u011fer hastal\u0131klar\u0131, hasta\u2013hekim ortakl\u0131\u011f\u0131n\u0131n en g\u00fc\u00e7l\u00fc bi\u00e7imde hissedildi\u011fi alanlardan biridir\u201d dedi.\u00a0<\/span><\/p>\n

Nadir hastal\u0131klar konusunda hekimlere e\u011fitim veriliyor<\/b><\/p>\n

T\u00fcrk Toraks Derne\u011fi Klinik Sorunlar \u00c7al\u0131\u015fma Grubu olarak sahadan gelen ihtiya\u00e7lar\u0131 izlediklerine de dikkat \u00e7eken Dr. \u00c7etin, \u201cHekim, hasta ve sa\u011fl\u0131k sistemi d\u00fczeyinde iyile\u015ftirmeye d\u00f6n\u00fck somut ad\u0131mlar at\u0131yoruz. Hekim fark\u0131ndal\u0131\u011f\u0131 ve e\u011fitimine y\u00f6nelik olarak g\u00f6\u011f\u00fcs hastal\u0131klar\u0131 asistan ve uzmanlar\u0131na hitap eden e\u011fitim serileri, nadir akci\u011fer hastal\u0131klar\u0131na y\u00f6nelik webinarlar, \u2018Nadir Akci\u011fer Hastal\u0131klar\u0131 Toraks Kitab\u0131\u2019 ve \u2018Toraks E\u011fitim Kartlar\u0131\u2019 gibi bilgi ara\u00e7lar\u0131 \u00fczerinde \u00e7al\u0131\u015f\u0131yoruz. Ayr\u0131ca, sahadaki uzmanlar\u0131n deneyimli merkezlerle h\u0131zl\u0131 koordinasyonunu kolayla\u015ft\u0131racak \u2018Dan\u0131\u015fma Hatt\u0131 ve Telekons\u00fcltasyon\u2019 gibi modellerin, tan\u0131 ve y\u00f6netimde \u00f6nemli kazan\u0131mlar sa\u011flayaca\u011f\u0131na inan\u0131yoruz\u201d dedi.<\/span><\/p>\n

<\/p>\n

Nadir akci\u011fer hastal\u0131klar\u0131 T\u00fcrkiye kay\u0131t \u00e7al\u0131\u015fmas\u0131 ger\u00e7ekle\u015fti<\/b><\/p>\n

T\u00fcrk Toraks Derne\u011fi Merkez Y\u00f6netim Kurulu \u00dcyesi Prof. Dr. Z\u00fcleyha Bing\u00f6l ise hasta ve hasta yak\u0131nlar\u0131n\u0131n g\u00fcvenilir bilgiye eri\u015fimi de en az tan\u0131 ve tedavi kadar kritik bir ihtiya\u00e7t\u0131r diyerek s\u00f6zlerine \u015f\u00f6yle devam etti: \u201cT\u00fcrk Toraks Derne\u011fi olarak hastal\u0131k temelli bilgilendirici metinler, hasta kitap\u00e7\u0131klar\u0131, afi\u015fler ve dijital i\u00e7erikler \u00fcreterek toplumun do\u011fru bilgiye eri\u015fimini ve fark\u0131ndal\u0131\u011f\u0131n artmas\u0131n\u0131 desteklemeyi hedefliyoruz. Bilimsel bilgi \u00fcretimi ve \u00fclkemize \u00f6zg\u00fc verinin olu\u015fturulmas\u0131 ise nadir hastal\u0131klar alan\u0131nda temel gerekliliklerdendir. Bu kapsamda, derne\u011fimizin \u00e7at\u0131s\u0131 alt\u0131nda y\u00fcr\u00fct\u00fclen \u2018Nadir Akci\u011fer Hastal\u0131klar\u0131 T\u00fcrkiye Kay\u0131t \u00c7al\u0131\u015fmas\u0131\u2019 ile \u00e7ok merkezli ve ulusal d\u00fczeyde veri toplanmas\u0131, hastal\u0131klar\u0131n epidemiyolojik \u00f6zelliklerinin, tan\u0131, tedavi yakla\u015f\u0131mlar\u0131n\u0131n ve uzun d\u00f6nem sonu\u00e7lar\u0131n\u0131n sistematik bi\u00e7imde ortaya konmas\u0131 ama\u00e7lanm\u0131\u015ft\u0131r. \u00c7al\u0131\u015fman\u0131n ilk verileri Nisan ay\u0131nda yap\u0131lacak olan Uluslaras\u0131 Kat\u0131l\u0131ml\u0131 T\u00fcrk Toraks Derne\u011fi 29. Y\u0131ll\u0131k Kongresi\u2019nde sunulacakt\u0131r. Ulusal kay\u0131tlar hem hasta bak\u0131m\u0131n\u0131n iyile\u015ftirilmesine hem de gelecekteki ara\u015ft\u0131rma ve sa\u011fl\u0131k politikalar\u0131na bilimsel zemin olu\u015fturacakt\u0131r.\u201d<\/span><\/p>\n

Nadir hastal\u0131\u011fa yakalananlar yaln\u0131z b\u0131rak\u0131lmamal\u0131<\/b><\/p>\n

Prof. Dr. Bing\u00f6l s\u00f6zlerini \u015f\u00f6yle noktalad\u0131: \u201cSa\u011fl\u0131k Bakanl\u0131\u011f\u0131m\u0131z taraf\u0131ndan yay\u0131mlanan \u20182023\u20132027 Nadir Hastal\u0131klar Sa\u011fl\u0131k Strateji Belgesi ve Eylem Plan\u0131\u2019, nadir hastal\u0131klar alan\u0131nda fark\u0131ndal\u0131\u011f\u0131n art\u0131r\u0131lmas\u0131, tan\u0131 ve tedaviye eri\u015fimin g\u00fc\u00e7lendirilmesi ve ulusal veri sistemlerinin geli\u015ftirilmesi gibi kritik hedefleri i\u00e7eren \u00f6nemli bir yol haritas\u0131d\u0131r. T\u00fcrk Toraks Derne\u011fi olarak, bu ulusal hedeflere katk\u0131 sunmak, nadir akci\u011fer hastal\u0131klar\u0131 \u00f6zelinde e\u011fitim, do\u011fru y\u00f6nlendirme a\u011flar\u0131, hasta bilgilendirme materyalleri, telekons\u00fcltasyon modelleri ve ulusal kay\u0131t \u00e7al\u0131\u015fmalar\u0131 gibi ba\u015fl\u0131klarda bakanl\u0131\u011f\u0131m\u0131zla ve t\u00fcm payda\u015flarla i\u015f birli\u011fine haz\u0131r oldu\u011fumuzu kamuoyuna sayg\u0131yla duyururuz. Nadir akci\u011fer hastal\u0131klar\u0131yla ya\u015fayan t\u00fcm hastalar\u0131m\u0131z\u0131n, yak\u0131nlar\u0131n\u0131n ve bu alanda emek veren sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131n\u0131n yan\u0131nda oldu\u011fumuzu; tan\u0131ya ve tedaviye eri\u015fimi kolayla\u015ft\u0131racak her ad\u0131m\u0131n destek\u00e7isi olaca\u011f\u0131m\u0131z\u0131 bir kez daha vurguluyoruz. Unutmayal\u0131m: Nadir g\u00f6r\u00fclen hastal\u0131klar, do\u011fru politika ve do\u011fru i\u015f birli\u011fiyle \u2018yaln\u0131z b\u0131rak\u0131lmamas\u0131 gereken\u2019 hastal\u0131klard\u0131r\u201d (BSHA \u2013 Bilim ve Sa\u011fl\u0131k Haber Ajans\u0131)\u00a0<\/span><\/p><\/p>\n","protected":false},"excerpt":{"rendered":"

Nadir hastal\u0131klar g\u00fcn\u00fc…Toplumda 2 binde birden daha az insanda g\u00f6r\u00fclen hastal\u0131klara ‘nadir hastal\u0131klar’ deniyor.<\/p>\n","protected":false},"author":1,"featured_media":53890,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[467,4102,6739,6714,1122],"class_list":["post-53889","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik","tag-hasta","tag-hastaliklar","tag-nadir","tag-nadir-hastaliklar","tag-tani"],"_links":{"self":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/53889","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/comments?post=53889"}],"version-history":[{"count":1,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/53889\/revisions"}],"predecessor-version":[{"id":53893,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/53889\/revisions\/53893"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media\/53890"}],"wp:attachment":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media?parent=53889"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/categories?post=53889"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/tags?post=53889"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}