Ekim ay\u0131n\u0131n son haftas\u0131 olarak kabul edilen Kelebek Hastalar\u0131 Haftas\u0131 kapsam\u0131nda Diyarbak\u0131r\u2019daki 46 kelebek hastas\u0131 i\u00e7in \u0130stanbul\u2019da \u00f6zel bir etkinlik d\u00fczenlendi.<\/p>\n
Kad\u0131nlar\u0131n bulu\u015ftu\u011fu ve kelebek hastalar\u0131na sahip \u00e7\u0131kt\u0131\u011f\u0131 bu \u00f6zel etkinlikte yakla\u015f\u0131k 150 ki\u015fi bir araya geldi. Emin Grup b\u00fcnyesinde dayan\u0131\u015fma ve yard\u0131mla\u015fma faaliyetleri y\u00fcr\u00fcten Merhum Hac\u0131 Habibullah Geredevi Vakf\u0131 (HAGEV) taraf\u0131ndan kelebek hastalar\u0131 yarar\u0131na d\u00fczenlenen organizasyonda Diyarbak\u0131r\u2019daki 46 kelebek hastas\u0131n\u0131n acil sa\u011fl\u0131k ihtiya\u00e7lar\u0131 kar\u015f\u0131land\u0131 ve az bilinen hastal\u0131\u011f\u0131n \u00f6nemine y\u00f6nelik bir fark\u0131ndal\u0131k sa\u011flanmas\u0131 ama\u00e7land\u0131.<\/p>\n
Yard\u0131mseverlerin bulu\u015ftu\u011fu bu \u00f6zel etkinlikte HAGEV Ba\u015fkan\u0131 P\u0131nar \u00dcst\u00fcn ve Ger\u00e7ekler D\u00fcnyas\u0131 Ara\u015ft\u0131rma Yard\u0131mla\u015fma ve Dayan\u0131\u015fma Derne\u011fi Ba\u015fkan\u0131 \u015eenay \u00c7al\u0131\u015f\u0131r kat\u0131ld\u0131.<\/p>\n
“Kelebekleri yanl\u0131z b\u0131rakmay\u0131n”<\/p>\n
Etkinlikte a\u00e7\u0131l\u0131\u015f konu\u015fmas\u0131n\u0131 yapan HAGEV Ba\u015fkan\u0131 P\u0131nar \u00dcst\u00fcn, kelebek hastalar\u0131n\u0131 bu anlaml\u0131 g\u00fcnde yaln\u0131z b\u0131rakmayan t\u00fcm kad\u0131nlara te\u015fekk\u00fcr etti. \u00dcst\u00fcn \u015f\u00f6yle konu\u015ftu: \u201cKelebek hastalar\u0131yla yolumuzun kesi\u015fti\u011fi g\u00fcnden bug\u00fcne onlar\u0131 hi\u00e7 yaln\u0131z b\u0131rakmad\u0131k. Amac\u0131m\u0131z onlar\u0131n yaralar\u0131na merhem olmak, onlara destek olmak ve az bilinen bu hastal\u0131\u011f\u0131n T\u00fcrkiye genelinde daha fazla bilinmesini sa\u011flamak. \u00c7\u00fcnk\u00fc zor bir hastal\u0131k ve hastalar pek \u00e7ok sorunla ba\u015f etmeye \u00e7al\u0131\u015ft\u0131klar\u0131 i\u00e7in daha \u00e7ok deste\u011fe ihtiya\u00e7lar\u0131 var. Biz de, bize deste\u011fini esirgemeyen bug\u00fcnk\u00fc destek\u00e7ilerimizle kelebek hastalar\u0131 fark\u0131ndal\u0131k haftas\u0131nda onlar\u0131n sesini duyurmak, moral vermek istedik. Kat\u0131l\u0131mc\u0131lar\u0131n da deste\u011fi ile \u015fuan Diyarbak\u0131r\u2019daki 46 hastan\u0131n acil sa\u011fl\u0131k ihtiya\u00e7lar\u0131 kar\u015f\u0131lanm\u0131\u015f oldu\u201d.<\/p>\n
“T\u00fcrkiye\u2019de 1000 kelebek hastas\u0131 var”<\/p>\n
Bir kelebek hastas\u0131 annesi oldu\u011funu belirten Ger\u00e7ekler D\u00fcnyas\u0131 Ara\u015ft\u0131rma Yard\u0131mla\u015fma ve Dayan\u0131\u015fma Derne\u011fi Ba\u015fkan\u0131 \u015eenay \u00c7al\u0131\u015f\u0131r ise yapt\u0131\u011f\u0131 konu\u015fmada HAGEV\u2019e desteklerinden \u00f6t\u00fcr\u00fc te\u015fekk\u00fcr ederek herkesin bu konuda sorumluluk almas\u0131 gerekti\u011fini vurgulad\u0131. T\u00fcrkiye genelinde 130 kelebek hastas\u0131na destek olduklar\u0131n\u0131 belirten \u00c7al\u0131\u015f\u0131r \u201cKelebek hastalar\u0131 da bu toplumunun bir par\u00e7as\u0131. Sadece maddi de\u011fil manevi deste\u011fe de ihtiya\u00e7lar\u0131 var. Bu anlamda HAGEV\u2019in kelebek hastalar\u0131na verdi\u011fi deste\u011fin \u00f6rnek al\u0131nmas\u0131 gerekir. Bug\u00fcn T\u00fcrkiye\u2019de resmi rakamlara g\u00f6re 1000 kelebek hastas\u0131 var ve bu hastal\u0131k bir ya\u015f\u0131ndan 56 ya\u015f\u0131na \u00e7\u0131kabiliyor. Verece\u011fimiz moralle bu hastal\u0131k daha iyi yerlere geliyor. Hastal\u0131k hayata engel de\u011fil. Bu y\u00fczden onlara sahip \u00e7\u0131kal\u0131m\u201d dedi.<\/p>\n
Epidermolozis b\u00fclloza (Epidermolysis bullosa) veya kelebek hastal\u0131\u011f\u0131 olarak bilinen deride ve mukozada (a\u011f\u0131z i\u00e7i, genital b\u00f6lge, anal b\u00f6lge, g\u00f6z, burun, nefes yolu, yemek borusu) gibi v\u00fccut b\u00f6lgelerinde i\u00e7i su dolu kabarc\u0131klar (b\u00fcl) olu\u015fumu ile kendini g\u00f6steren bir hastal\u0131kt\u0131r.<\/p>\n","protected":false},"excerpt":{"rendered":"
EK\u0130M AYININ SON HAFTASI OLARAK KABUL ED\u0130LEN KELEBEK HASTALARI HAFTASI KAPSAMINDA D\u0130YARBAKIR’DAK\u0130 46 KELEBEK HASTASI \u0130\u00c7\u0130N \u0130STANBUL’DA \u00d6ZEL B\u0130R ETK\u0130NL\u0130K D\u00dcZENLEND\u0130.<\/p>\n","protected":false},"author":1,"featured_media":220945,"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":[1202,3716,3104,13331,3380],"class_list":["post-220944","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-cikti","tag-hastalarina","tag-kadinlar","tag-kelebek","tag-sahip"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/10\/kelebek-hastalarina-kadinlar-sahip-cikti_385eb67.jpg?fit=1000%2C461","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-VtC","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/220944","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=220944"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/220944\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/220945"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=220944"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=220944"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=220944"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}