{"id":63975,"date":"2019-03-01T11:16:50","date_gmt":"2019-03-01T08:16:50","guid":{"rendered":"http:\/\/www.tvturk.com\/index.php\/nadir-hastalikli-ozel-cocuklara-tedavi-sonrasi-moral-eglencesi\/"},"modified":"2019-03-01T11:16:55","modified_gmt":"2019-03-01T08:16:55","slug":"nadir-hastalikli-ozel-cocuklara-tedavi-sonrasi-moral-eglencesi","status":"publish","type":"post","link":"http:\/\/www.tvturk.com\/index.php\/nadir-hastalikli-ozel-cocuklara-tedavi-sonrasi-moral-eglencesi\/","title":{"rendered":"Nadir hastal\u0131kl\u0131 \u00f6zel \u00e7ocuklara tedavi sonras\u0131 moral e\u011flencesi"},"content":{"rendered":"

D\u00fcnyada nadir hastal\u0131klar kategorisinde yer alan Fabry hastal\u0131\u011f\u0131 ile di\u011fer hastal\u0131klardaki \u00f6zel \u00e7ocuklar\u0131n moral ve motivasyonunu y\u00fcksek tutmak amac\u0131yla K\u0131r\u0131kkale \u00dcniversitesi T\u0131p Fak\u00fcltesi Hastanesinde tedavi sonras\u0131 e\u011flence program\u0131 d\u00fczenlendi.<\/p>\n

K\u0131r\u0131kkale \u00dcniversitesi T\u0131p Fak\u00fcltesi Hastanesi \u00c7ocuk Hastal\u0131klar\u0131 Klini\u011finde, d\u00fcnyada nadir g\u00f6r\u00fclen Fabry hastal\u0131\u011f\u0131 ile di\u011fer hastal\u0131klardaki \u00f6zel \u00e7ocuklar\u0131n moral ve motivasyonunu y\u00fcksek tutmak amac\u0131yla tedavi sonras\u0131nda m\u00fczikli e\u011flence program\u0131 d\u00fczenlendi. Doyas\u0131ya e\u011flenerek vakit ge\u00e7iren \u00e7ocuklara \u00fcniversite \u00f6\u011frencileri de e\u015flik etti. Hastane odas\u0131n\u0131 ba\u015ftan a\u015fa\u011f\u0131 s\u00fcsleyip palya\u00e7o k\u0131l\u0131\u011f\u0131na da giren \u00f6\u011frenciler \u00e7ocuklara sakal, b\u0131y\u0131k yaparak renkli g\u00f6r\u00fcnt\u00fcler olu\u015fturdu. M\u00fczik e\u015fli\u011finde dakikalarca dans edip oynayan \u00e7ocuklar g\u00fcl\u00fcp e\u011flendi. \u00d6zel \u00e7ocuklar\u0131n mutlulu\u011funa doktorlar ve hem\u015firelerde ortak oldu.<\/p>\n

Fabry hastas\u0131 Nuranur Ye\u015fil, \u201cBug\u00fcn ben oyun oynad\u0131m. Sonra yemek yedim. Dans ettim. \u00c7ok mutlu oldum te\u015fekk\u00fcr ederim. Ben b\u00f6yle e\u011flenmemi\u015ftim. \u0130yi ki vars\u0131n\u0131z” diye konu\u015ftu.<\/p>\n

\u00dcniversite \u00f6\u011frencisi \u00d6\u011frenci Toplulu\u011fu Ba\u015fkan\u0131 B\u00fc\u015fra Ayd\u0131ntepe, \u201cOnlar\u0131n hep aram\u0131zda oldu\u011funu yans\u0131tm\u0131\u015f olduk. \u00c7ok g\u00fczel etkinlikler yapt\u0131k. G\u00fczel vakit ge\u00e7irdik. \u00c7ocuklarla dans ettik. Oyun oynad\u0131k. Boyama yapt\u0131k. Y\u00fcz boyad\u0131k\u201d \u015feklinde konu\u015ftu.<\/p>\n

\u00c7ocuk Sa\u011fl\u0131\u011f\u0131 ve Hastal\u0131klar\u0131 Anabilim Dal\u0131 Ba\u015fkan\u0131 Prof. Dr. Selda B\u00fclb\u00fcl, nadir hastal\u0131klar\u0131n \u00e7ok az g\u00f6r\u00fcld\u00fc\u011f\u00fc i\u00e7in bu hastalar\u0131n toplum taraf\u0131ndan bilinmedi\u011fini s\u00f6yledi. Nadir hastal\u0131klarla ilgili toplumda fark\u0131ndal\u0131\u011f\u0131n \u00e7ok az oldu\u011funu ifade eden Prof. Dr. B\u00fclb\u00fcl, “Klini\u011fimizde bir etkinlik d\u00fczenlemek istedik. \u00c7\u00fcnk\u00fc nadir hastal\u0131klarla ilgili toplumun fark\u0131ndal\u0131\u011f\u0131 \u00e7ok az. Bu hastal\u0131klar, \u00e7ok az g\u00f6r\u00fcld\u00fc\u011f\u00fc i\u00e7in her 100 bin canl\u0131 do\u011fumda 2-5 aras\u0131nda yani 40 binde 20 binde 1 g\u00f6r\u00fcl\u00fcyor. O y\u00fczden de \u00e7o\u011fu zaman doktorlar da bilmiyor. Toplumda bilmiyor ve atlan\u0131yor. Kendi tan\u0131s\u0131n\u0131 alm\u0131yor. Farkl\u0131 tan\u0131larla mesela bir Fabry hastal\u0131\u011f\u0131 romatizmal hasl\u0131k diye takip edilebiliyor veya b\u00f6brek yetmezli\u011fi diye tarif edilebiliyor. Halbuki bu hastal\u0131klar ger\u00e7ek te\u015fhisini alsa g\u00fcn\u00fcm\u00fczde bir k\u0131sm\u0131n\u0131n tedavisi de var. 3 bin nadir hastal\u0131\u011f\u0131 olan gruptan birka\u00e7 hastam\u0131z\u0131 \u00e7a\u011f\u0131rd\u0131k. Bu hastalar\u0131m\u0131zla b\u00f6yle bir etkinlik d\u00fczenleyip sizlerle payla\u015fmak istedik. Anneleriyle birlikte geldiler. Burada s\u00fcrekli birlikte olduklar\u0131 doktorlar\u0131 var. \u00c7\u00fcnk\u00fc baz\u0131lar\u0131n\u0131 her hafta, baz\u0131lar\u0131n\u0131 ayda bir s\u00fcrekli g\u00f6r\u00fcyoruz. Art\u0131k bizi tan\u0131yorlar zaten. Bizi g\u00f6r\u00fcnce ko\u015fmaya ba\u015fl\u0131yorlar. Bir de \u00f6\u011frenci toplulu\u011fumuz var. Onlar i\u00e7in palya\u00e7olar, \u015firinler, boyamalar yapt\u0131lar dans ettik birlikte, \u015fark\u0131 s\u00f6yledik. Kendi seslerini duyurmaya \u00e7al\u0131\u015ft\u0131lar. Hediyeler verdik bug\u00fcn\u00fcn an\u0131s\u0131na. Bir de \u015fimdi a\u011fz\u0131m\u0131z tatland\u0131raca\u011f\u0131z. \u0130n\u015fallah bug\u00fcn\u00fc hep beraber b\u00f6ylece kutlam\u0131\u015f olaca\u011f\u0131z” dedi.

\"Nadir <\/a> <\/div> <\/div>
\"Nadir <\/a> <\/div>
\"Nadir <\/a> <\/div> <\/div> <\/div>
\"Nadir <\/a> <\/div> <\/div>
\"Nadir <\/a> <\/div> <\/div> <\/div> <\/div><\/p>\n","protected":false},"excerpt":{"rendered":"

D\u00dcNYADA NAD\u0130R HASTALIKLAR KATEGOR\u0130S\u0130NDE YER ALAN FABRY HASTALI\u011eI \u0130LE D\u0130\u011eER HASTALIKLARDAK\u0130 \u00d6ZEL \u00c7OCUKLARIN MORAL VE MOT\u0130VASYONUNU Y\u00dcKSEK TUTMAK AMACIYLA KIRIKKALE \u00dcN\u0130VERS\u0130TES\u0130 TIP FAK\u00dcLTES\u0130 HASTANES\u0130NDE TEDAV\u0130 SONRASI E\u011eLENCE PROGRAMI D\u00dcZENLEND\u0130.<\/p>\n","protected":false},"author":1,"featured_media":63976,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[1073,353,3042,19682,68,19681,36,144],"class_list":["post-63975","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-cocuklara","tag-eglencesi","tag-hastalikli","tag-moral","tag-nadir","tag-sonrasi","tag-tedavi"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/03\/nadir-hastalikli-ozel-cocuklara-tedavi-sonrasi-moral-eglencesi_afea49e.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-gDR","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/63975","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/comments?post=63975"}],"version-history":[{"count":1,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/63975\/revisions"}],"predecessor-version":[{"id":63984,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/63975\/revisions\/63984"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/63976"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=63975"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=63975"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=63975"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}