{"id":15702,"date":"2021-08-02T11:43:25","date_gmt":"2021-08-02T15:43:25","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=15702"},"modified":"2021-08-02T13:54:21","modified_gmt":"2021-08-02T17:54:21","slug":"straddling-the-line-between-the-sick-and-well-worlds-a-mother-shares-her-late-daughters-25-year-long-battle-with-cystic-fibrosis","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/straddling-the-line-between-the-sick-and-well-worlds-a-mother-shares-her-late-daughters-25-year-long-battle-with-cystic-fibrosis\/","title":{"rendered":"Hasta ve \u0130yi D\u00fcnyalar Aras\u0131ndaki \u00c7izgiyi A\u015fmak: Bir Anne, Merhum K\u0131z\u0131n\u0131n 25 Y\u0131l S\u00fcren Kistik Fibrozisle M\u00fccadelesini Payla\u015f\u0131yor"},"content":{"rendered":"

Emily's Entourage (EE), 15 Temmuz 2021 Per\u015fembe g\u00fcn\u00fc, mevcut hedefe y\u00f6nelik tedavilerden fayda g\u00f6rmeyen kistik fibrozis (KF) toplulu\u011funun son 10%'si ad\u0131na savunuculuk yapmak \u00fczere ABD G\u0131da ve \u0130la\u00e7 Dairesi (FDA) ile bir \"Hasta Dinleme Oturumu\" d\u00fczenledi. <\/span><\/i>Oturumun \u00f6zetini buradan okuyabilirsiniz.<\/span><\/i><\/a> A\u015fa\u011f\u0131da, hastal\u0131kla ilgili deneyimlerini payla\u015fan KF toplulu\u011funun alt\u0131 \u00fcyesinden birinin tan\u0131kl\u0131\u011f\u0131 yer almaktad\u0131r.<\/span><\/i><\/p>\n

Merhaba, benim ad\u0131m Diane Shader Smith. Size \u00e7ift akci\u011fer nakli yap\u0131ld\u0131ktan iki ay sonra 25 ya\u015f\u0131nda vefat eden k\u0131z\u0131m Mallory'den bahsetmek istiyorum. \u015eu anda mevcut olan mod\u00fclat\u00f6rlerin KF hastalar\u0131n\u0131n 90%'si i\u00e7in neler yapt\u0131\u011f\u0131n\u0131 okudu\u011fumda, Mallory'nin ya\u015fayamad\u0131\u011f\u0131 i\u00e7in kalbim k\u0131r\u0131l\u0131yor. Umudum, 10% tedavi edilmeyen grupta hala m\u00fccadele eden hastalar\u0131n daha kolay bir zaman ge\u00e7irmesi ve daha iyi bir sonuca ula\u015fmas\u0131d\u0131r.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

Mallory'ye \u00fc\u00e7 ya\u015f\u0131ndayken KF te\u015fhisi kondu. Bir\u00e7ok semptomu vard\u0131 <\/span>-<\/span> inat\u00e7\u0131 \u00f6ks\u00fcr\u00fck, kronik burun ak\u0131nt\u0131s\u0131 ve ciddi GI sorunlar\u0131. Doktorlar te\u015fhis konulduktan bir g\u00fcn sonra tedaviye ba\u015flad\u0131lar.\u00a0<\/span><\/p>\n

Mallory k\u00fc\u00e7\u00fck bir \u00e7ocukken tedavi olmaktan nefret ederdi. Her g\u00fcn ba\u015flama zaman\u0131 geldi\u011finde saklan\u0131rd\u0131... dolaba, yata\u011f\u0131n alt\u0131na, onu bulamayaca\u011f\u0131m\u0131z\u0131 d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fc herhangi bir yere. Mark, Astronot ve Pat Pat ad\u0131n\u0131 verdi\u011fi bir oyun uydurdu. Astronot, soludu\u011fu ila\u00e7lar\u0131 veren maske i\u00e7in, Pat Pat ise g\u00f6\u011f\u00fcs perk\u00fcsyon terapisi i\u00e7indi. Hepimiz i\u00e7in dayan\u0131lmazd\u0131.<\/p>\n

Sonunda Mallory her \u015feye al\u0131\u015ft\u0131. \u00c7ok mutlu bir \u00e7ocukluk ge\u00e7irdi, her zaman uyumluydu... ta ki dokuz ya\u015f\u0131nda bir g\u00fcn art\u0131k tedavi olmay\u0131 reddedene kadar. \u0130\u015fte o zaman KF'nin \u00f6l\u00fcmc\u00fcl olabilece\u011fi fikrini ortaya att\u0131k. <\/span>-<\/span> ve bu y\u00fczden bu kadar kat\u0131 protokolleri takip etmesi gerekti\u011fini a\u00e7\u0131klad\u0131. \u00dc\u00e7 g\u00fcn boyunca a\u011flad\u0131 ama sonra hayat\u0131n\u0131n farkl\u0131 oldu\u011funu kabullenmi\u015f g\u00f6r\u00fcn\u00fcyordu.\u00a0<\/span><\/p>\n

\u00a0\"\"<\/p>\n

W<\/span>Mallory 12 ya\u015f\u0131ndayken kamptan eve \u00e7ok hasta d\u00f6nd\u00fc ve agresif bir hastal\u0131k nedeniyle ilk kez hastaneye yat\u0131r\u0131ld\u0131. B. Cepacia<\/em> Enfeksiyon. Tedaviler daha da karma\u015f\u0131kla\u015ft\u0131; hayat daha da zorla\u015ft\u0131.<\/p>\n

Mallory 10 y\u0131l boyunca bir g\u00fcnl\u00fck tuttu. G\u00fcnl\u00fc\u011f\u00fcnde \u015f\u00f6yle yaz\u0131yordu: \"Bir KF hastas\u0131 i\u00e7in zaman en ac\u0131mas\u0131z g\u00fc\u00e7t\u00fcr. Kistik fibroz hayallerden, zamandan, seyahatten, arkada\u015fl\u0131klardan, \u00f6zg\u00fcrl\u00fckten, potansiyelden, planlardan ve hayatlardan \u00e7ok \u015fey al\u0131r. Deprem gibidir, ayaklar\u0131m\u0131z\u0131n alt\u0131ndaki zemini s\u00fcrekli hareket ettirir, bu y\u00fczden her zaman dengemizi yeniden kazanmak, ayaklar\u0131m\u0131z\u0131 yere basmak i\u00e7in m\u00fccadele ederiz. Her zaman alt\u0131m\u0131zdaki zemine bakmam\u0131z gerekirken ileriye bakmak zor; y\u00fcr\u00fcmekten \u00e7ok yalpal\u0131yoruz, dik durmak i\u00e7in t\u00f6kezliyoruz.\"<\/p><\/blockquote>\n

KF'li olmak \u00e7ocuklar\u0131 hasta ve iyi d\u00fcnyalar aras\u0131ndaki \u00e7izgide kalmaya zorlar ve normal \u00e7ocukluk geli\u015fimini ve ba\u011f\u0131ms\u0131z olmay\u0131 zorla\u015ft\u0131r\u0131r. G\u00fcnde iki ila d\u00f6rt kez uzun tedaviler yapmak akademik ve sosyal a\u00e7\u0131dan y\u0131k\u0131c\u0131d\u0131r.<\/span><\/p>\n

K\u0131z\u0131m \u00e7ok ba\u015far\u0131l\u0131 bir \u00f6\u011frenciydi, \u00fc\u00e7 spor dal\u0131nda \u00fcniversite sporcusuydu ve ailesi ve arkada\u015flar\u0131 taraf\u0131ndan \u00e7ok sevilirdi. Hayat\u0131n\u0131n b\u00fcy\u00fck b\u00f6l\u00fcm\u00fcnde KF g\u00f6r\u00fcnmezdi, bu y\u00fczden herkes onun her \u015feye sahip olan alt\u0131n k\u0131z oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyordu. Mallory, ac\u0131tmayan bir nefes alma \u015fans\u0131 i\u00e7in her \u015feyi takas edebilirdi... hastal\u0131kla tan\u0131mlanmayan bir hayata sahip olmak i\u00e7in.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

S\u0131k s\u0131k hastal\u0131\u011f\u0131 ve hayat\u0131n getirecekleri hakk\u0131nda endi\u015feleniyordu. Endi\u015fesini y\u00f6netmek i\u00e7in m\u00fcmk\u00fcn oldu\u011funca do\u011fada vakit ge\u00e7irdi ve \u00fcniversite tezini Hawaii ekosistemlerinin yava\u015f yava\u015f yok olu\u015funu bir s\u00fcperb\u00f6cek y\u00fcz\u00fcnden azalan akci\u011fer fonksiyonlar\u0131yla kar\u015f\u0131la\u015ft\u0131ran paralel \u00f6yk\u00fclerle yazd\u0131. Bu benzetme v\u00fccuduna neler oldu\u011funu anlamas\u0131na yard\u0131mc\u0131 oldu. Bu onun i\u00e7in de bizim i\u00e7in de deh\u015fet vericiydi.<\/span><\/p>\n

Mallory mezuniyet t\u00f6reninde yapt\u0131\u011f\u0131 konu\u015fmada evrensel olarak sayg\u0131 duyulan \u0130ngiliz filozof Winnie the Pooh'dan al\u0131nt\u0131 yapt\u0131: \"Eskiden sonsuzlu\u011fa inan\u0131rd\u0131m... ama sonsuzluk ger\u00e7ek olamayacak kadar iyiydi.\" Mallory, s\u0131n\u0131f arkada\u015flar\u0131na hitap edebilmek i\u00e7in s\u00f6zlerini dikkatle se\u00e7ti ancak ikinci, \u00f6zel anlam, \"Kafamdaki karanl\u0131k sesler, umutsuzluk simsarlar\u0131\" olarak ifade etti\u011fi \u015feyden ilham ald\u0131.\u00a0<\/span><\/p>\n

\"\"<\/span><\/p>\n

Mallory \u00e7ift akci\u011fer nakli yap\u0131ld\u0131ktan iki ay sonra \u00f6ld\u00fc. Son konu\u015fmalar\u0131m\u0131zdan birinde ona KF hastas\u0131 oldu\u011fu i\u00e7in \u00e7ok \u00fczg\u00fcn oldu\u011fumu ve bu hastal\u0131ktan nefret etti\u011fimi s\u00f6yledim. Cevap olarak \u015f\u00f6yle yazm\u0131\u015ft\u0131: \"KF karma\u015f\u0131k, \u00f6ng\u00f6r\u00fclemez, geri d\u00f6n\u00fc\u015f\u00fc olmayan, ilerleyici, ac\u0131 verici, bo\u011fucu, ot gibi bir hastal\u0131kt\u0131r ve ondan nefret etmekte bir sak\u0131nca yoktur.\"<\/span><\/p>\n

Diane ve KF toplulu\u011funun di\u011fer be\u015f \u00fcyesine, bu \u00f6l\u00fcmc\u00fcl hastal\u0131kla ya\u015famaya dair samimi ve ki\u015fisel deneyimlerini cesurca payla\u015ft\u0131klar\u0131 i\u00e7in daha fazla minnettar olamazd\u0131k. KF toplulu\u011funun son 10%'sinde yer alanlar\u0131n acil kar\u015f\u0131lanmam\u0131\u015f tedavi ihtiya\u00e7lar\u0131n\u0131 savunma konusundaki kararl\u0131l\u0131klar\u0131na sonsuz bir hayranl\u0131k ve hayranl\u0131k duyuyoruz.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

Emily's Entourage (EE), 15 Temmuz 2021 Per\u015fembe g\u00fcn\u00fc, mevcut hedefe y\u00f6nelik tedavilerden fayda g\u00f6rmeyen kistik fibrozis (KF) toplulu\u011funun son 10%\u201csi ad\u0131na savunuculuk yapmak \u00fczere ABD G\u0131da ve \u0130la\u00e7 Dairesi (FDA) ile bir \u201dHasta Dinleme Oturumu\" d\u00fczenledi. Oturumun \u00f6zetini buradan okuyabilirsiniz. A\u015fa\u011f\u0131da bir... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":15715,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"Straddling the Line Between the Sick and Well Worlds: A Mother Shares Her Late Daughter\u2019s 25-Year-Long Battle With Cystic Fibrosis ","_seopress_titles_desc":"When I read about what currently available modulators are doing for 90% of CF patients, my heart breaks that Mallory didn\u2019t get to live. My hope is that patients in the 10% non-treated group still in the fight will have an easier time of it and a better outcome.\u00a0","_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":[],"_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],"tags":[171,7,172,170],"class_list":["post-15702","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-cf-stories","tag-cystic-fibrosis","tag-fda","tag-lung-transplant"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Mallory_IG.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15702","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\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=15702"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15702\/revisions"}],"predecessor-version":[{"id":15719,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15702\/revisions\/15719"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/15715"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=15702"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=15702"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=15702"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}