{"id":1647,"date":"2013-10-29T14:59:43","date_gmt":"2013-10-29T21:59:43","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=1647"},"modified":"2022-03-08T17:49:25","modified_gmt":"2022-03-08T22:49:25","slug":"top-5-things-you-probably-dont-know-about-cystic-fibrosis","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/top-5-things-you-probably-dont-know-about-cystic-fibrosis\/","title":{"rendered":"Kistik Fibrozis Hakk\u0131nda (Muhtemelen) Bilmedi\u011finiz 5 \u015eey"},"content":{"rendered":"

Emily's Entourage'dan Emily, Kistik Fibrozis (KF) ile ya\u015fama dair ilgin\u00e7 bilgiler ve az bilinen ger\u00e7ekleri payla\u015f\u0131yor.<\/em><\/p>\n

1. Kistik fibrozlu ki\u015filer bir arada olamazlar.<\/strong><\/p>\n

Akci\u011ferlerimizde biriken kal\u0131n, yap\u0131\u015fkan mukus, aptal puding gibi i\u015flev g\u00f6r\u00fcr. Bu nedenle, bakteriler akci\u011ferlerimize girdi\u011finde, sonsuza dek orada kalma e\u011filimindedirler, oysa sa\u011fl\u0131kl\u0131 insanlar\u0131n ba\u011f\u0131\u015f\u0131kl\u0131k sistemleri onlarla sava\u015fabilir. Sonu\u00e7 olarak, KF'li ki\u015filer akci\u011ferlerinde tehlikeli bakteriler bar\u0131nd\u0131r\u0131r ve bu bakteriler yaln\u0131zca KF'li veya ba\u011f\u0131\u015f\u0131kl\u0131k sistemi zay\u0131f olan di\u011fer ki\u015filere bula\u015f\u0131r.<\/p>\n

\u0130yi haber \u015fu ki, KF sa\u011fl\u0131kl\u0131 insanlar i\u00e7in hi\u00e7 bula\u015f\u0131c\u0131 veya tehlikeli de\u011fildir. K\u00f6t\u00fc haber ise \u00e7apraz enfeksiyon riskleri nedeniyle KF'li ki\u015filerin birbirlerinden 6 fitten daha yak\u0131n olmamalar\u0131 tavsiye edilir.<\/p>\n

Buna kar\u015f\u0131l\u0131k, bilgi payla\u015f\u0131m\u0131ndan ve destekten faydalanabilmemiz i\u00e7in geli\u015fen \u00e7evrimi\u00e7i topluluklar olu\u015fturduk, ancak sanal ba\u011flant\u0131lar\u0131n asla y\u00fcz y\u00fcze olanlar\u0131n yerini alamayaca\u011f\u0131n\u0131 inkar edemeyiz. Benim i\u00e7in bu, KF ile ilgili en zor \u015feylerden biri.<\/p>\n

2. CF ve Tay Sachs, en \u00f6l\u00fcmc\u00fcl Yahudi genetik hastal\u0131klar\u0131 olarak beraberedir.<\/strong>
\n\u00d6l\u00fcmc\u00fcl Yahudi genetik hastal\u0131\u011f\u0131 d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcn\u00fczde, akl\u0131n\u0131za \"Tay Sachs\" gelir, de\u011fil mi? Ancak ger\u00e7ek \u015fu ki, yakla\u015f\u0131k 25 ila 27 A\u015fkenazi Yahudisinden biri CF ta\u015f\u0131y\u0131c\u0131s\u0131d\u0131r ve bu da onu Tay Sachs kadar yayg\u0131n hale getirir. Bu y\u00fczden Emily's Entourage, Yahudi toplumuna CF'nin onlar\u0131n da hastal\u0131\u011f\u0131 oldu\u011funu duyurma misyonundad\u0131r.<\/p>\n

3. Cildiniz a\u015f\u0131r\u0131 tuzludur.<\/strong>
\nEskiden tuzlu cilt, KF'nin ay\u0131rt edici \u00f6zelli\u011fiydi. Bunun nedeni, hatal\u0131 bir tuz klor\u00fcr kanal\u0131n\u0131n KF'li ki\u015filerin \u00e7ok fazla tuz atmas\u0131na neden olmas\u0131d\u0131r. Ba\u015fka bir deyi\u015fle, terledi\u011fimizde \u00e7ok fazla tuz kaybederiz ve bu da bizi susuz kalma riskinde art\u0131r\u0131r.<\/p>\n

D\u0131\u015far\u0131s\u0131 s\u0131caksa ve kistik fibrozlu birinin cildini yalarsan\u0131z (elbette izin alarak!), ne kadar tuzlu olduklar\u0131n\u0131 tadars\u0131n\u0131z! Hatta tuzun ciltlerinde kristalle\u015fti\u011fini bile g\u00f6rebilirsiniz.<\/p>\n

G\u00fcn\u00fcm\u00fczde kistik fibrozun tan\u0131 testi, terinizdeki tuz klor\u00fcr seviyelerini \u00f6l\u00e7t\u00fc\u011f\u00fc i\u00e7in \"ter testi\" olarak adland\u0131r\u0131lmaktad\u0131r.<\/p>\n

4. Biz usta aldat\u0131c\u0131lar\u0131z.<\/strong>
\nKistik fibroz g\u00f6r\u00fcnmez bir hastal\u0131kt\u0131r, yani akci\u011ferlerimiz ve di\u011fer organlar\u0131m\u0131z i\u00e7eride ne kadar hasta olsa da, d\u0131\u015far\u0131dan bunu anlayamazs\u0131n\u0131z. Sadece bana bakt\u0131\u011f\u0131n\u0131zda, ortalama akci\u011fer fonksiyonunun \u00fc\u00e7te birinden daha az\u0131na sahip oldu\u011fumu veya akci\u011fer nakli de\u011ferlendirmesinin e\u015fi\u011finde oldu\u011fumu muhtemelen asla tahmin edemezsiniz.<\/p>\n

Bu bir l\u00fctuf ve bir lanettir. Olumsuz taraf\u0131, d\u0131\u015far\u0131dan aldat\u0131c\u0131 bir \u015fekilde sa\u011fl\u0131kl\u0131 g\u00f6r\u00fcnd\u00fc\u011f\u00fcm\u00fcz i\u00e7in ne kadar hasta hissetti\u011fimizi ve g\u00fcnl\u00fck i\u015flerin ne kadar zor oldu\u011funu takdir etmenin genellikle zor olmas\u0131d\u0131r. Ancak di\u011fer taraftan, tabiri caizse hastal\u0131\u011f\u0131m\u0131z\u0131 a\u00e7\u0131k\u00e7a belli etmemek g\u00fczeldir, b\u00f6ylece insanlar bize bakt\u0131klar\u0131nda hastal\u0131\u011f\u0131m\u0131zdan fazlas\u0131n\u0131 g\u00f6r\u00fcrler. Ayr\u0131ca, hasta olmaktansa sa\u011fl\u0131kl\u0131 g\u00f6r\u00fcnmek genellikle iyi bir \u015feydir.<\/p>\n

5. Kistik fibrozun takma ad\u0131 65 g\u00fcl.<\/strong>
\n\u00c7ok eskiden, kistik fibrozlu \u00e7ocuklar \"Kistik Fibrozis\"i telaffuz etmekte zorluk \u00e7ekiyorlard\u0131. Bu y\u00fczden, kula\u011fa benzer gelen bir takma ad buldular: altm\u0131\u015f be\u015f g\u00fcl. G\u00fcller kesinlikle hayat\u0131 tehdit eden bir hastal\u0131ktan \u00e7ok daha ho\u015f bir g\u00f6r\u00fcnt\u00fc \u00e7a\u011fr\u0131\u015ft\u0131r\u0131yor. Asl\u0131nda, takma ad o kadar yerle\u015fmi\u015f ki bug\u00fcn hala kullan\u0131l\u0131yor ve g\u00fcller kistik fibrozun resmi olmayan bir sembol\u00fc haline geldi.<\/p>\n

Bu ger\u00e7ekler veya genel olarak KF hakk\u0131nda sorular\u0131n\u0131z m\u0131 var? A\u015fa\u011f\u0131daki yorumlar b\u00f6l\u00fcm\u00fcne b\u0131rak\u0131n. Hi\u00e7bir soru \u00e7ok basit veya sa\u00e7ma de\u011fildir ve her \u015feyi yan\u0131tlamaktan mutluluk duyar\u0131z!<\/em><\/p>\n

\nBA\u011eI\u015e YAPMAK<\/a><\/p>","protected":false},"excerpt":{"rendered":"

Emily's Entourage'dan Emily, Kistik Fibrozis (KF) ile ya\u015fam hakk\u0131nda ilgin\u00e7 bilgiler ve daha az bilinen ger\u00e7ekleri payla\u015f\u0131yor. 1. KF'li insanlar birlikte olamazlar. Akci\u011ferlerimizde biriken kal\u0131n, yap\u0131\u015fkan mukus, aptal bir puding gibi i\u015flev g\u00f6r\u00fcr. Dolay\u0131s\u0131yla, bakteriler akci\u011ferlerimize girdi\u011finde sonsuza kadar orada kalma e\u011filimindedirler, oysa sa\u011fl\u0131kl\u0131 insanlar\u0131n ba\u011f\u0131\u015f\u0131kl\u0131k sistemleri... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[{"_seopress_pro_rich_snippets_type":"none"}],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1,6],"tags":[],"class_list":["post-1647","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1647","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/58"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=1647"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1647\/revisions"}],"predecessor-version":[{"id":16786,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1647\/revisions\/16786"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=1647"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=1647"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=1647"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}