{"id":3751,"date":"2018-03-05T14:39:30","date_gmt":"2018-03-05T11:39:30","guid":{"rendered":"https:\/\/iletim.istanbul.edu.tr\/?p=3751"},"modified":"2018-04-02T14:46:35","modified_gmt":"2018-04-02T11:46:35","slug":"nadir-hastaliklarda-erken-tani-hayat-kurtariyor","status":"publish","type":"post","link":"https:\/\/iletim.istanbul.edu.tr\/index.php\/2018\/03\/05\/nadir-hastaliklarda-erken-tani-hayat-kurtariyor\/","title":{"rendered":"Nadir Hastal\u0131klarda Erken Tan\u0131 Hayat Kurtar\u0131yor"},"content":{"rendered":"

\u0130\u00dc Cerrahpa\u015fa T\u0131p Fak\u00fcltesi \u00d6\u011fretim \u00dcyesi ve \u00c7ocuk Romatoloji Uzman\u0131 Prof. Dr. \u00d6zg\u00fcr Kasap\u00e7opur, Nadir Hastal\u0131klar G\u00fcn\u00fc kapsam\u0131nda yapt\u0131\u011f\u0131 a\u00e7\u0131klamada nadir hastal\u0131klarda erken tan\u0131n\u0131n \u00f6nemine dikkat \u00e7ekti.<\/p>\n

Her y\u0131l \u015eubat ay\u0131n\u0131n son g\u00fcn\u00fc milyonlarca insan\u0131 etkileyen nadir g\u00f6r\u00fclen hastal\u0131klara dikkat \u00e7ekmek amac\u0131yla \u201cD\u00fcnya Nadir Hastal\u0131klar G\u00fcn\u00fc\u201d olarak kabul ediliyor. Son y\u0131llarda t\u00fcm d\u00fcnyada \u00f6nemi artan Nadir Hastal\u0131klar ile ilgili olarak \u0130\u00dc Cerrahpa\u015fa T\u0131p Fak\u00fcltesi \u00d6\u011fretim \u00dcyesi ve \u00c7ocuk Romatoloji Uzman\u0131 Prof. Dr. \u00d6zg\u00fcr Kasap\u00e7opur, \u00f6nemli a\u00e7\u0131klamalarda bulundu.<\/p>\n

\u200b\u201cY\u00fczlerce \u00c7e\u015fit Nadir Hastal\u0131k Var\u201d<\/strong><\/p>\n

Nadir hastal\u0131klar\u0131n d\u00fcnyada 350-400 milyon insan\u0131 etkiledi\u011fini ifade eden Prof. Dr. \u00d6zg\u00fcr Kasap\u00e7opur, \u201cNadir hastal\u0131k kavram\u0131, t\u00fcm d\u00fcnyada sa\u011fl\u0131kl\u0131 bir toplumda on binde bir ki\u015fiden daha az g\u00f6r\u00fclen hastal\u0131klara verilen isimdir. \u00c7ocukluk \u00e7a\u011f\u0131 a\u00e7\u0131s\u0131ndan bakt\u0131\u011f\u0131m\u0131zda ise kabaca iki bin \u00e7ocuktan bir ki\u015fide g\u00f6r\u00fclen hastal\u0131\u011fa nadir hastal\u0131k diyoruz. Nadir hastal\u0131klar\u0131n say\u0131s\u0131 ile ilgili net bir rakam vermek m\u00fcmk\u00fcn de\u011fil. Onlarca hatta y\u00fczlerce \u00e7e\u015fit nadir hastal\u0131k var. Nadir hastal\u0131\u011fa yol a\u00e7an \u00e7ok farkl\u0131 nedenler var. Bunlar\u0131n tan\u0131nmas\u0131 \u00e7ok \u00f6nemli. Toplumda nadir g\u00f6r\u00fcld\u00fckleri i\u00e7in yani hekimler \u00e7ok s\u0131k kar\u015f\u0131la\u015fmad\u0131\u011f\u0131 i\u00e7in \u00e7ok daha ciddi sorunlarla kar\u015f\u0131m\u0131za \u00e7\u0131kabiliyor\u201d \u015feklinde konu\u015ftu.<\/p>\n

\u201cNadir Hastal\u0131klar\u0131n Yakla\u015f\u0131k %80\u2019i Genetik Nedenli\u201d<\/strong><\/p>\n

Nadir hastal\u0131klar\u0131n pek \u00e7o\u011funun nedeninin genetik oldu\u011funu belirten Prof. Dr. Kasap\u00e7opur, \u201cNadir hastal\u0131klar\u0131n yakla\u015f\u0131k %80\u2019i genetik nedenlidir. Ama genetik nedenli olmayan, daha \u00e7ok ba\u011f\u0131\u015f\u0131kl\u0131k sistem bozuklu\u011funa ba\u011fl\u0131 olarak ortaya \u00e7\u0131kan nadir hastal\u0131klar da vard\u0131r. Bunlar\u0131n i\u00e7erisinde \u00f6zellikle benim de \u00e7al\u0131\u015fm\u0131\u015f oldu\u011fum \u2018\u00e7ocukluk \u00e7a\u011f\u0131 romatizmal hastal\u0131klar\u0131\u2019 gelmektedir. Baz\u0131 \u00e7ocukluk \u00e7a\u011f\u0131 kanserleri de nadir hastal\u0131k kavram\u0131 alt\u0131nda de\u011ferlendirilebilir\u201d dedi.<\/p>\n

Nadir hastal\u0131klarla ilgili fark\u0131ndal\u0131\u011f\u0131n artmas\u0131n\u0131n \u00e7ok \u00f6nemli oldu\u011funu dile getiren Prof. Dr. Kasap\u00e7opur, \u201cBu hastal\u0131klar toplumda nadir g\u00f6r\u00fcld\u00fc\u011f\u00fc i\u00e7in de\u011ferlendiren ekip arkada\u015flar\u0131m\u0131n akl\u0131na da \u00e7ok s\u0131k gelmemekte. O y\u00fczden de bu bulgulara ait fark\u0131ndal\u0131\u011f\u0131n artmas\u0131 \u00e7ok \u00f6nemli. Biz Cerrahpa\u015fa T\u0131p Fak\u00fcltesi olarak bu konudaki hastal\u0131klarla ilgili bir ba\u015fvuru merkeziyiz. T\u00fcrkiye\u2019nin her yerinden ve \u00fclke d\u0131\u015f\u0131ndan da kabul etti\u011fimiz \u00e7ok say\u0131da hastam\u0131z var. Bunlar\u0131n takiplerini ortaya \u00e7\u0131kan ana bulgular\u0131n tan\u0131land\u0131rma s\u00fcreci \u00e7ok \u00f6nemli. Erken tan\u0131 konuldu\u011funda tedaviye erken ba\u015flamak m\u00fcmk\u00fcn. Bu nadir hastal\u0131klar\u0131n tedavisinde kullan\u0131lan ila\u00e7lar da hastal\u0131k \u00e7ok yayg\u0131n olmad\u0131\u011f\u0131 i\u00e7in, \u00e7ok s\u0131k kullan\u0131lan ila\u00e7lar de\u011fil. Bu ila\u00e7lara biz \u2018yetim ila\u00e7\u2019 ad\u0131n\u0131 veriyoruz\u201d ifadelerini kulland\u0131.<\/p>\n

\u201cZaman\u0131nda Konulan Tan\u0131 Kal\u0131c\u0131 Bir Hasar\u0131 \u00d6nleyebilir\u201d<\/strong><\/p>\n

\u00dclkemizde akraba evliliklerinin \u00e7ok fazla g\u00f6r\u00fclmesinin nadir hastal\u0131klar ile de s\u0131k kar\u015f\u0131la\u015f\u0131lmas\u0131na sebep oldu\u011funu dile getiren Prof. Dr. Kasap\u00e7opur konu\u015fmas\u0131na \u015fu \u015fekilde devam etti: \u201c\u00c7ok \u00e7e\u015fitli olgularla, \u00e7ok farkl\u0131 \u015fekillerde kar\u015f\u0131m\u0131za \u00e7\u0131kan hastal\u0131klar var. \u00c7ocuklarda daha \u00e7ok romatizmal hastal\u0131klar a\u00e7\u0131s\u0131ndan bakt\u0131\u011f\u0131m\u0131zda aktif iltihap ile birlikte kar\u015f\u0131m\u0131za geliyor. Biz bu aktif iltihab\u0131 kontrol alt\u0131na alamad\u0131\u011f\u0131m\u0131z zaman, \u00e7ocuk kar\u015f\u0131m\u0131za kontrol alt\u0131na al\u0131namayan ate\u015fler, hastal\u0131k hali ciddi eklem tutulumlar\u0131, ciddi eklem bulgular\u0131 ile birlikte geliyor. Bu eklem bulgular\u0131, eklem tutulumlar\u0131 \u00e7ocukta kal\u0131c\u0131 eklem hasar\u0131na yol a\u00e7abiliyor. Ortalama \u00f6mr\u00fcn 80 y\u0131l oldu\u011fu \u00fclkemizde bir \u00e7ocu\u011fun \u00e7ok k\u00fc\u00e7\u00fck ya\u015fta eklem tutulmamalar\u0131 ya\u015famas\u0131 \u00e7ocu\u011fun t\u00fcm ya\u015fam\u0131n\u0131 etkiliyor. Ama bu \u00e7ocuklar\u0131 etkili olarak zaman\u0131nda tan\u0131land\u0131r\u0131r, zaman\u0131nda tedavi edecek olursak kal\u0131c\u0131 bir hasar\u0131n olmas\u0131n\u0131 \u00f6nlemi\u015f oluruz.\u201d<\/p>\n

Tan\u0131 ve tedavi s\u00fcrecinin olduk\u00e7a zor oldu\u011funu vurgulayan Prof. Dr. Kasap\u00e7opur, \u201cAilelerin bize zaman\u0131nda ula\u015fmalar\u0131 \u00e7ok \u00f6nemli. Yani fak\u00fcltemize zaman\u0131nda ba\u015fvuran, zaman\u0131nda tan\u0131land\u0131rma ve tedavi s\u00fcrecine ba\u015flad\u0131\u011f\u0131m\u0131z hastalar\u0131m\u0131zda \u00e7ok daha h\u0131zla tedavi sonucu al\u0131yoruz. Hastalar bize ne kadar erken gelirlerse d\u00fczelmeyen ve yenileyen ate\u015fleri olan hastalar\u0131n tedavi s\u00fcrecinde o denli ba\u015far\u0131l\u0131 olabiliyoruz\u201d dedi.<\/p>\n

\"\"<\/p>\n

\u201cNadir Hastal\u0131klarla \u0130lgili \u00c7al\u0131\u015fan \u00d6nemli Merkezler Var\u201d<\/strong><\/p>\n

D\u00fcnyan\u0131n her yerinde nadir hastal\u0131klar ile ilgili \u00e7al\u0131\u015fan merkezler oldu\u011funu s\u00f6yleyen Prof. Dr. Kasap\u00e7opur, \u201cNadir hastal\u0131klarla ilgili \u00e7al\u0131\u015fan \u00f6nemli merkezler var. \u00c7ocuk romatoloji de bu gruptaki en \u00f6nemli merkezlerden biri. \u00c7ocuk romatoloji ile ilgili \u00e7al\u0131\u015f\u0131yoruz. D\u00fcnyada bu konuyla ilgili ara\u015ft\u0131rma yapan t\u00fcm ara\u015ft\u0131rmac\u0131larla ortak \u00e7al\u0131\u015fmalar\u0131m\u0131z var. Tan\u0131 ve tedavi s\u00fcre\u00e7leri ile ilgili yeni geli\u015fmeler bizlere \u00e7ok \u00f6nemli kolayl\u0131klar sa\u011fl\u0131yor ve sa\u011fl\u0131kl\u0131 \u00e7ocuklar\u0131m\u0131z\u0131n olmas\u0131, sa\u011fl\u0131kl\u0131 bir neslimizin olmas\u0131 i\u00e7in bizler de bu konuda yard\u0131mc\u0131 olmaya \u00e7al\u0131\u015f\u0131yoruz\u201d \u015feklinde konu\u015ftu.<\/p>\n

Nadir hastal\u0131klara \u00f6rnek olarak FMF hastal\u0131\u011f\u0131ndan s\u00f6z eden Prof. Dr. Kasap\u00e7opur \u015funlar\u0131 dile getirdi: \u201cNadir hastal\u0131klar \u00fclkeden \u00fclkeye de de\u011fi\u015febilir. \u00dclkemizde en \u00e7ok g\u00f6r\u00fclen genetik hastal\u0131klardan biri olan \u2018ailesel akdeniz ate\u015fi\u2019, Hollanda\u2019ya gitti\u011finiz zaman nadir hastal\u0131k olarak kar\u015f\u0131n\u0131za \u00e7\u0131kabilir. Yine \u00e7ocukluk \u00e7a\u011f\u0131nda g\u00f6rd\u00fc\u011f\u00fcm\u00fcz genetik hastal\u0131klar var. Bunlar da do\u011fumsal olarak ortaya \u00e7\u0131kan v\u00fccut bozukluklar\u0131 oluyor. V\u00fccut b\u00fct\u00fcnl\u00fc\u011f\u00fcn\u00fcn bozuldu\u011fu hastal\u0131klar, bu tip hastal\u0131klar da nadir hastal\u0131klar\u0131n i\u00e7inde.\u201d<\/p>\n

\u201cMedya \u00c7ok \u00d6nemli Bir G\u00fcce Sahip\u201d<\/strong><\/p>\n

Nadir hastal\u0131klarla ilgili olarak medyan\u0131n \u00e7ok \u00f6nemli bir g\u00fcce sahip oldu\u011funu ifade eden Prof. Dr. Kasap\u00e7opur konu\u015fmas\u0131n\u0131 \u015fu \u015fekilde sonland\u0131rd\u0131: \u201cMedyan\u0131n g\u00fcc\u00fc \u00e7ok y\u00fcksek. Bunu size ya\u015fad\u0131\u011f\u0131m\u0131z bir \u00f6rnekten anlatmak istiyorum. Bunlar\u0131 duyurmak \u00e7ok \u00f6nemli, bunlar\u0131 halkla payla\u015fmak \u00e7ok \u00f6nemli. \u00c7\u00fcnk\u00fc bunlar izlenildi\u011fi zaman insanlar\u0131n fark\u0131ndal\u0131\u011f\u0131 art\u0131yor. Ba\u015f\u0131mdan ge\u00e7en bir \u00f6rne\u011fi anlatmak istiyorum. Ge\u00e7ti\u011fimiz aylarda \u00e7ok nadir g\u00f6rd\u00fc\u011f\u00fcm\u00fcz bir damar iltihab\u0131 tan\u0131s\u0131nda \u00f6nemli katk\u0131larda bulunmu\u015ftuk ve medyada haber olarak yer alm\u0131\u015ft\u0131. \u00c7ocu\u011fun ciddi g\u00f6rme kayb\u0131 olmu\u015ftu. \u00c7ocu\u011fun damarsal tutumu b\u00fct\u00fcn v\u00fccut damarlar\u0131n\u0131 etkileyen bir hastal\u0131k vard\u0131 ve tedaviyle birlikte b\u00fct\u00fcn fonksiyonlar\u0131 d\u00fczeldi. Bu haberi Erzurum\u2019da dinleyen bir aile haberden sonra bunun Cerrahpa\u015fa T\u0131p Fak\u00fcltesi\u2019nde tedavi edildi\u011fini duyarak bize geldi ve o \u00e7ocuk da \u015fu an sa\u011fl\u0131\u011f\u0131na kavu\u015ftu. Bu anlamda nadir hastal\u0131klar ile ilgili haberlerin yap\u0131lmas\u0131 fark\u0131ndal\u0131\u011f\u0131n artmas\u0131 i\u00e7in \u00e7ok \u00f6nemli.\u201d<\/p>\n

\u0130\u00dc Bas\u0131n ve Halkla \u0130li\u015fkiler M\u00fcd\u00fcrl\u00fc\u011f\u00fc<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

\u0130\u00dc Cerrahpa\u015fa T\u0131p Fak\u00fcltesi \u00d6\u011fretim \u00dcyesi ve \u00c7ocuk Romatoloji Uzman\u0131 Prof. Dr. \u00d6zg\u00fcr Kasap\u00e7opur, Nadir Hastal\u0131klar G\u00fcn\u00fc kapsam\u0131nda yapt\u0131\u011f\u0131 a\u00e7\u0131klamada nadir hastal\u0131klarda erken tan\u0131n\u0131n \u00f6nemine dikkat \u00e7ekti.<\/p>\n","protected":false},"author":14,"featured_media":3752,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jnews-multi-image_gallery":[],"jnews_single_post":[],"jnews_primary_category":[],"jnews_social_meta":[],"jnews_override_counter":[],"footnotes":""},"categories":[32],"tags":[],"class_list":["post-3751","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik"],"_links":{"self":[{"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/posts\/3751","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/comments?post=3751"}],"version-history":[{"count":0,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/posts\/3751\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/media\/3752"}],"wp:attachment":[{"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/media?parent=3751"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/categories?post=3751"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/iletim.istanbul.edu.tr\/index.php\/wp-json\/wp\/v2\/tags?post=3751"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}