{"id":13065,"date":"2019-05-31T12:01:35","date_gmt":"2019-05-31T16:01:35","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=13065"},"modified":"2023-12-20T05:17:16","modified_gmt":"2023-12-20T10:17:16","slug":"address-the-unseen-scars-mental-health-and-cystic-fibrosis","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/address-the-unseen-scars-mental-health-and-cystic-fibrosis\/","title":{"rendered":"G\u00f6r\u00fcnmeyen \u0130zleri Ele Al\u0131n: Ruh Sa\u011fl\u0131\u011f\u0131 ve Kistik Fibrozis"},"content":{"rendered":"

Zaman zaman Emily's Entourage (EE) toplulu\u011funun bir par\u00e7as\u0131 olan konuk blog yazarlar\u0131n\u0131 blogumuza benzersiz sesleriyle katk\u0131da bulunmalar\u0131 i\u00e7in davet ediyoruz. May\u0131s ay\u0131n\u0131n Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131 olmas\u0131 \u015ferefine, #CFStrong serimizde bu hastal\u0131ktan do\u011frudan etkilenen bireyleri sergilemek istiyoruz. Bu ay\u0131n son konu\u011fu, Gunnar Esiason, Hasta Sosyal Yard\u0131m Direkt\u00f6r\u00fc Boomer Esiason Vakf\u0131<\/a>g\u00fc\u00e7l\u00fc KF savunucusu, konu\u015fmac\u0131, podcaster ve enerjisini KF i\u00e7in fark\u0131ndal\u0131k yaratmaya adayan bir yazar. KF gibi \u00f6l\u00fcmc\u00fcl bir genetik hastal\u0131\u011f\u0131n ki\u015finin ruh sa\u011fl\u0131\u011f\u0131 \u00fczerindeki etkileri hakk\u0131nda konu\u015furken bug\u00fcn onun sesini payla\u015fmaktan b\u00fcy\u00fck onur duyuyoruz. Gunnar ve \u00e7al\u0131\u015fmalar\u0131 hakk\u0131nda daha fazla bilgi edinmek i\u00e7in l\u00fctfen web sitesini ziyaret edin Burada<\/a>. <\/span><\/i><\/p>\n

Kimse size kay\u0131pla nas\u0131l ba\u015fa \u00e7\u0131kaca\u011f\u0131n\u0131z\u0131 s\u00f6yleyemez.<\/span><\/p>\n

T\u00fcm hayat\u0131m boyunca, tedavilerimi yapmam, do\u011fru beslenmem ve kendime iyi bakmam i\u00e7in bana s\u00fcrekli hat\u0131rlatmalarda bulunan biri varm\u0131\u015f gibi hissediyorum. Asl\u0131na bak\u0131l\u0131rsa, hayat\u0131m boyunca \u00e7ok say\u0131da <\/span>g\u00f6n\u00fcll\u00fcler<\/span><\/i> bana nas\u0131l yap\u0131laca\u011f\u0131n\u0131 \u00f6\u011fretti. En az\u0131ndan benim \u00e7ocuklu\u011fum b\u00f6yle ge\u00e7ti. Ebeveynlerim, arkada\u015flar\u0131m, ailem ve bak\u0131m ekiplerim benim i\u00e7in i\u015fe yarayan bir bak\u0131m rutini geli\u015ftirmemde \u00e7ok b\u00fcy\u00fck rol oynad\u0131lar. Ancak kimsenin beni haz\u0131rlamad\u0131\u011f\u0131 \u015fey, en yak\u0131n arkada\u015f\u0131m\u0131 benimle ayn\u0131 hastal\u0131ktan kaybetmekti.<\/span><\/p>\n

\"\"<\/p>\n

Ge\u00e7ti\u011fimiz Aral\u0131k ay\u0131nda Lea \u00f6ld\u00fc\u011f\u00fcnde, hayat\u0131m adeta tersine d\u00f6nd\u00fc. Hayat\u0131mdaki pek \u00e7ok farkl\u0131 \u015feyi sorgulad\u0131m, g\u00fcn ge\u00e7tik\u00e7e daha sinirli oldum ve her gece uykuya dalmaya \u00e7al\u0131\u015f\u0131rken kendimi tavana bakarken buldum. Kendimi t\u00fcm bunlar\u0131n korkun\u00e7 bir kabus oldu\u011funa ikna etmek i\u00e7in \u00e7ok u\u011fra\u015ft\u0131m.<\/span><\/p>\n

Ama \u00f6yle de\u011fildi. Ger\u00e7ek hayatt\u0131.<\/span><\/p>\n

Aral\u0131k 2018'den \u00f6nce, Kistik Fibrozis'in (KF) nihai sonucu hi\u00e7 bu kadar yak\u0131n\u0131ma gelmemi\u015fti. Birdenbire KF'li binlerce insan\u0131n ve ailelerinin katlanmak zorunda kald\u0131\u011f\u0131 ger\u00e7ekle kar\u015f\u0131 kar\u015f\u0131ya kald\u0131m.<\/span><\/p>\n

KF'nin hikayesi g\u00fcn ge\u00e7tik\u00e7e de\u011fi\u015fiyor gibi g\u00f6r\u00fcn\u00fcyor. \u00c7o\u011fumuz \u00f6n\u00fcm\u00fczdeki y\u0131l i\u00e7inde KF'nin alt\u0131nda yatan nedeni tedavi eden bir ilaca sahip olmay\u0131 umuyoruz, ancak Lea i\u00e7in bu hikaye yeterince h\u0131zl\u0131 de\u011fi\u015fmedi.<\/span><\/p>\n

\n

Kaydetti\u011fimiz ilerleme muazzam, ancak bilimin bize yeti\u015fmesini beklerken hepimizin hayat\u0131 hassas bir dengede duruyor.<\/strong><\/p>\n<\/blockquote>\n

A\u00e7\u0131k\u00e7as\u0131, KF gibi bir hastal\u0131kla ya\u015faman\u0131n zor ger\u00e7ekli\u011fi de bu. Kaydetti\u011fimiz ilerleme muazzam, ancak bilimin bize yeti\u015fmesini beklerken ve beklerken hepimizin hayat\u0131 hassas bir dengede duruyor. Bizim i\u00e7in her \u015fey birka\u00e7 hafta i\u00e7inde de\u011fi\u015febilir.<\/span><\/p>\n

Son g\u00fcnlerinde Lea bana bu kadar yakla\u015ft\u0131\u011f\u0131na inanamad\u0131\u011f\u0131n\u0131 s\u00f6yledi... KF'nin 90%'deki bizler i\u00e7in \u00e7ok farkl\u0131 bir anlam ta\u015f\u0131yaca\u011f\u0131 ve \u015fu anda FDA onay\u0131n\u0131 bekleyen yeni \u00e7\u0131\u011f\u0131r a\u00e7an ila\u00e7lardan yararlanaca\u011f\u0131n\u0131 umdu\u011fumuz bir d\u00fcnyaya \u00e7ok yak\u0131nd\u0131. Lea'y\u0131 kaybetme ger\u00e7e\u011fini kavramakta hala zorlan\u0131yorum ve bir\u00e7ok y\u00f6nden an\u0131nda nas\u0131l ba\u015fa \u00e7\u0131kaca\u011f\u0131m\u0131 \u00f6\u011frenmek zorunda kald\u0131m.<\/span><\/p>\n

Aradan ge\u00e7en aylar i\u00e7inde onun vefat\u0131n\u0131 kabullenmek ve dostlu\u011fumuz \u00fczerine d\u00fc\u015f\u00fcnmek zorunda kald\u0131m. Hala sinirli oldu\u011fum anlar oluyor, hala bazen uykuya dalmakta zorlan\u0131yorum ve hala \u015fu soruyu soruyorum, \"<\/span>Neden o?<\/span><\/i>\" ama onun an\u0131s\u0131n\u0131, toplumumuzun kar\u015f\u0131 kar\u015f\u0131ya oldu\u011fu en acil engellerden baz\u0131lar\u0131n\u0131n \u00fcstesinden gelmek i\u00e7in bir motivasyon kayna\u011f\u0131 olarak kullanmaya ba\u015flad\u0131m.<\/span><\/p>\n

\"\"<\/p>\n

KF ile ya\u015faman\u0131n dile getirilmeyen semptomlar\u0131ndan baz\u0131lar\u0131, tekrarlayan kay\u0131p d\u00f6nemlerinden ge\u00e7mek, s\u00fcrekli ve amans\u0131z t\u0131bbi travma ve \u00f6l\u00fcmc\u00fcl bir hastal\u0131kla ba\u015fa \u00e7\u0131kman\u0131n her zaman var olan stresidir. Yeti\u015fkinlik d\u00f6neminde KF ile ya\u015fayan bir\u00e7o\u011fumuz hayat\u0131m\u0131zdaki insanlar\u0131 kaybettik ve hi\u00e7 kimse bizi buna haz\u0131rlamad\u0131. Neb kaplar\u0131m\u0131 sterilize etmek i\u00e7in birka\u00e7 farkl\u0131 teknik \u00f6\u011fretilmi\u015f olsa da, kimse bana g\u00f6r\u00fcnmeyen baz\u0131 yaralar\u0131 nas\u0131l ele alaca\u011f\u0131m\u0131 \u00f6\u011fretmedi.<\/span><\/p>\n

Bence ruh sa\u011fl\u0131\u011f\u0131 sorunlar\u0131n\u0131 KF'nin somut semptomlar\u0131 olarak g\u00f6rmeye ba\u015flamam\u0131z gerekiyor ve bunu yapt\u0131\u011f\u0131m\u0131zda bunun meyvelerini almaya ba\u015flayaca\u011f\u0131m\u0131z\u0131 biliyorum. KF o kadar benzersiz ki - ya\u015fam boyu s\u00fcr\u00fcyor, s\u00fcrekli dikkat gerektiriyor ve bir\u00e7o\u011fumuz olduk\u00e7a normal ya\u015fayabiliyoruz - bu semptomlar\u0131 tedavi etmek i\u00e7in benzersiz bir yola ihtiyac\u0131m\u0131z olaca\u011f\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcyorum.<\/span><\/p>\n

\n

Bence KF ile ya\u015fayan insanlar\u0131n da duygular\u0131n\u0131n \u00fczerine gitme konusunda kendilerini g\u00fc\u00e7l\u00fc hissetmeleri gerekiyor.<\/strong><\/p>\n<\/blockquote>\n

Lea'n\u0131n vefat\u0131 bana kendim hakk\u0131nda \u00e7ok \u015fey \u00f6\u011fretti, ama hi\u00e7bir \u015fey ya\u015fama ve olabilece\u011fim en iyi insan olma arzumdan daha fazlas\u0131n\u0131 \u00f6\u011fretmedi. Vefat\u0131ndan bu yana ge\u00e7en s\u00fcrede, KF ile ilgili kendi duygular\u0131m\u0131 ele almam gerekti\u011fini \u00f6\u011frendim. Bu kolay olmad\u0131 ve hala \u00fczerinde \u00e7al\u0131\u015ft\u0131\u011f\u0131m bir \u015fey! Daha b\u00fcy\u00fck bir \u015fekilde, KF ile ya\u015fayan insanlar\u0131n da duygular\u0131n\u0131 ele almak i\u00e7in kendilerini g\u00fc\u00e7l\u00fc hissetmeleri gerekti\u011fini d\u00fc\u015f\u00fcn\u00fcyorum. Yukar\u0131dakilerin \u00f6zellikle KF ile ya\u015fayan yeti\u015fkinler i\u00e7in ge\u00e7erli oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Streslerimiz ve endi\u015felerimiz \u00e7ok uzun s\u00fcredir g\u00f6z ard\u0131 ediliyor. KF ile etkili bir \u015fekilde nas\u0131l ba\u015fa \u00e7\u0131kaca\u011f\u0131m\u0131z\u0131 \u00f6\u011frenmenin ve bu duygular\u0131 ele almak i\u00e7in kendimizi rahat hissedebilece\u011fimiz bir d\u00fcnyan\u0131n pe\u015finden gitmenin zaman\u0131 geldi!<\/span><\/p>","protected":false},"excerpt":{"rendered":"

Zaman zaman Emily's Entourage (EE) toplulu\u011funun bir par\u00e7as\u0131 olan konuk blog yazarlar\u0131n\u0131 blogumuza benzersiz sesleriyle katk\u0131da bulunmalar\u0131 i\u00e7in davet ediyoruz. May\u0131s ay\u0131n\u0131n Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131 olmas\u0131 \u015ferefine, #CFStrong serimizde bu hastal\u0131ktan do\u011frudan etkilenen bireyleri tan\u0131tmak istiyoruz. Bu ay\u0131n son konu\u011fu... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1704,"featured_media":13070,"comment_status":"open","ping_status":"closed","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":"","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[{"url":"","title":"","desc":"","thumbnail":"","duration":"","rating":"","view_count":"","tag":"","cat":""}],"_seopress_pro_schemas_manual":null,"_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],"tags":[107,108,7,106,13],"class_list":["post-13065","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-boomer-esiason","tag-boomer-esiason-foundation","tag-cystic-fibrosis","tag-gunnar-esiason","tag-patient-advocacy"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Gunnar_1.jpg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13065","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\/1704"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=13065"}],"version-history":[{"count":3,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13065\/revisions"}],"predecessor-version":[{"id":20543,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/13065\/revisions\/20543"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/13070"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=13065"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=13065"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=13065"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}