Nadir g\u00f6r\u00fclen ve kesin bir tedavisi olmayan bir deri hastal\u0131\u011f\u0131 olan skleroderma hastal\u0131\u011f\u0131n\u0131n d\u00fcnyadaki en k\u00fc\u00e7\u00fck ma\u011fduru 4 ya\u015f\u0131ndaki Mira Ko\u015far, \u00e7ocuklar i\u00e7in hen\u00fcz ila\u00e7 \u00fcretilmedi\u011fi i\u00e7in yeti\u015fkinler i\u00e7in \u00fcretilen ila\u00e7lar\u0131 kullan\u0131yor.<\/p>\n
Skleroderma hastal\u0131\u011f\u0131 ile ilgili fark\u0131ndal\u0131k olu\u015fturmak ve bilgi vermek i\u00e7in bir etkinlik d\u00fczenlendi. Etkinli\u011fe Pulmoner Hipertansiyon ve Skleroderma Hasta Derne\u011fi Ankara Temsilcisi Ay\u00e7a Ko\u015far, Hacettepe \u00dcniversitesi Romatoloji Bilim Dal\u0131 Dr. Erdal Atalay ve hastal\u0131\u011fa yakalanm\u0131\u015f ki\u015filer ve aileler kat\u0131ld\u0131.<\/p>\n
D\u00fczenlenen etkinlikte hastal\u0131kla ilgili bilgiler verildi, hastal\u0131\u011f\u0131n yava\u015flat\u0131lmas\u0131na y\u00f6nelik \u00f6nemli bilgiler hastalar ve yak\u0131nlar\u0131 ile payla\u015f\u0131ld\u0131.<\/p>\n
\u201cMira d\u00fcnyada ve T\u00fcrkiye\u2019de en k\u00fc\u00e7\u00fck ya\u015fta g\u00f6r\u00fclen skleroderma hastas\u0131\u201d<\/p>\n
Fark\u0131ndal\u0131k etkinli\u011fini d\u00fczenleyen Pulmoner Hipertansiyon ve Skleroderma Hasta Derne\u011fi Ankara Temsilcisi Ay\u00e7a Ko\u015far, 4 ya\u015f\u0131ndaki k\u0131z\u0131 Mira\u2019n\u0131n bu hastal\u0131\u011f\u0131n d\u00fcnyadaki en k\u00fc\u00e7\u00fck ma\u011fduru oldu\u011funu s\u00f6yleyerek, “Hastal\u0131k nadir ki\u015filerde g\u00f6r\u00fcn\u00fcyor. Kesin bir tedavisi yok. Mira d\u00fcnyada ve T\u00fcrkiye\u2019de en k\u00fc\u00e7\u00fck ya\u015fta g\u00f6r\u00fclen skleroderma hastas\u0131. Daha \u00f6nce bu kadar k\u00fc\u00e7\u00fck ya\u015fta g\u00f6r\u00fclmemi\u015ftir. K\u0131z\u0131ma \u00e7ok ge\u00e7 te\u015fhis konuldu. \u00c7ocuklar i\u00e7in ila\u00e7 hen\u00fcz \u00fcretilmedi. Yeti\u015fkinler i\u00e7in \u00fcretilen ila\u00e7lar\u0131 kullan\u0131yoruz. Skleroderma anormal bir hastal\u0131kt\u0131r. Y\u00fczde 49 engeli var sol elini kullanam\u0131yor. Kendi ihtiya\u00e7lar\u0131n\u0131 kar\u015f\u0131lamakta zorlan\u0131yor. Y\u00fcz b\u00f6lgesinde s\u0131k\u0131nt\u0131lar olu\u015fturuyor genelde\u201d \u015feklinde konu\u015ftu<\/p>\n
\u201cKesin net bir tedavisi yoktur hastal\u0131\u011f\u0131n\u201d<\/p>\n
Hacettepe \u00dcniversitesi \u0130hsan Do\u011framac\u0131 \u00c7ocuk Hastanesi, Romatoloji Bilim Dal\u0131 Erdal Atalay ise, “Nedeni bilinmeyen bir hastal\u0131k. V\u00fccudun kendi cildini yabanc\u0131 kabul edip, bir nevi sald\u0131r\u0131da bulunmas\u0131. Ciltte bir \u015fi\u015fme olu\u015fuyor. \u00c7ok nadir de olsa i\u00e7 organlara yans\u0131yor. \u00c7ocuklarda nadir g\u00f6r\u00fclen bir hastal\u0131k olup genelde eri\u015fkinlerde \u00e7ok g\u00f6r\u00fclen bir hastal\u0131k. Yakla\u015f\u0131k 30-40 ya\u015flara kadar s\u0131k\u0131nt\u0131 olmuyor. \u0130\u00e7 organlara yans\u0131mamas\u0131 i\u00e7in u\u011fra\u015f\u0131yoruz. Kesin bir tedavisi yoktur hastal\u0131\u011f\u0131n” ifadelerini kulland\u0131.<\/p>\n","protected":false},"excerpt":{"rendered":"
SKLERODERMA HASTALI\u011eINA Y\u00d6NEL\u0130K FARKINDALI\u011eI ARTTIRMAK \u0130\u00c7\u0130N PULMONER H\u0130PERTANS\u0130YON VE SKLERODERMA HASTA DERNE\u011e\u0130 ETK\u0130NL\u0130K D\u00dcZENLEND\u0130.<\/p>\n","protected":false},"author":1,"featured_media":178961,"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":[17277,11633,1166,43920,43919],"class_list":["post-178960","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-dunyadaki","tag-hastasi","tag-kucuk","tag-mira","tag-skleroderma"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/07\/dunyadaki-en-kucuk-skleroderma-hastasi-kucuk-mira_846348a.jpg?fit=1000%2C750","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-Kys","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/178960","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=178960"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/178960\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/178961"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=178960"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=178960"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=178960"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}