{"id":2110,"date":"2014-10-23T20:43:51","date_gmt":"2014-10-24T03:43:51","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=2110"},"modified":"2023-12-20T00:39:10","modified_gmt":"2023-12-20T05:39:10","slug":"pharmatimes-magazine-qa-with-emily","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/pharmatimes-magazine-qa-with-emily\/","title":{"rendered":"PharmaTimes Dergisi Emily ile Soru-Cevap"},"content":{"rendered":"

\"Herkes Derin Bir Nefesi Hak Eder\"<\/strong><\/span><\/p>\n

R\u00f6portaj\u0131n orijinali PharmaTimes Magazine'de yay\u0131nlanm\u0131\u015ft\u0131r ve \u015fu adresten temin edilebilir Burada<\/a><\/strong><\/em><\/p>\n

Emily Kramer-Golinkoff'a kistik fibrozis te\u015fhisi konuldu\u011funda alt\u0131 haftal\u0131kt\u0131. \u015eimdi 29 ya\u015f\u0131nda, Penn Medicine'da sosyal medya ve sa\u011fl\u0131k inovasyonu laboratuvar\u0131nda \u00e7al\u0131\u015f\u0131yor ve KF ara\u015ft\u0131rmalar\u0131 i\u00e7in fon toplamak amac\u0131yla bir hay\u0131r kurumu kurdu<\/em><\/p>\n

Emily'nin \u00e7evresi nedir?<\/strong>
\nAral\u0131k 2012'de ailem, arkada\u015flar\u0131m ve ben Emily's Entourage (www. emilysentourage.org) adl\u0131, kistik fibrozis ara\u015ft\u0131rmalar\u0131n\u0131n h\u0131z\u0131n\u0131 artt\u0131rmak i\u00e7in fon ve fark\u0131ndal\u0131k yaratan bir hay\u0131r kurumu kurduk. Son y\u0131llardaki at\u0131l\u0131mlar KF'nin \u00e7ehresini de\u011fi\u015ftiriyor ancak ne yaz\u0131k ki benim gibi nadir mutasyonlara sahip pek \u00e7ok insana fayda sa\u011flam\u0131yor. Bu nedenle Emily's Entourage, bu nadir mutasyonlara odaklanarak yeni tedaviler bulmaya ve nihayetinde KF i\u00e7in bir tedavi bulmaya odaklanm\u0131\u015ft\u0131r. \u015eimdiye kadar $650,000'den fazla ba\u011f\u0131\u015f toplad\u0131k ve bunu b\u00fcy\u00fck \u00f6l\u00e7\u00fcde Facebook, Twitter ve Instagram'da e-posta ve sosyal medya kampanyalar\u0131 yoluyla topluluklar\u0131m\u0131z\u0131 harekete ge\u00e7irerek yapt\u0131k.<\/p>\n

CF'nizi y\u00f6netmek i\u00e7in sosyal medyay\u0131 nas\u0131l kullan\u0131yorsunuz?<\/strong>
\nSosyal medya hastal\u0131k y\u00f6netimimde ayr\u0131lmaz bir rol oynuyor. Kistik fibrozisli insanlar \u00e7apraz enfeksiyon olas\u0131l\u0131\u011f\u0131 nedeniyle birbirlerine yak\u0131n olamazlar, bu nedenle sosyal a\u011flar\u0131n sa\u011flad\u0131\u011f\u0131 \u00e7evrimi\u00e7i topluluklar bizim i\u00e7in bir can simidi. Bilgi, yenilik\u00e7i fikirler, ara\u015ft\u0131rmalar ve sadece sizinle ayn\u0131 hastal\u0131\u011f\u0131 ya\u015fayan ve nefes alan insanlardan alabilece\u011finiz t\u00fcrden \u015fefkat ve deste\u011fi payla\u015ft\u0131\u011f\u0131m\u0131z geli\u015fen bir \u00e7evrimi\u00e7i KF toplulu\u011fu var. Sosyal medya beni en etkili etiket d\u0131\u015f\u0131 tedavilerimden baz\u0131lar\u0131yla tan\u0131\u015ft\u0131rd\u0131 ve bu tedaviler sa\u011fl\u0131\u011f\u0131m\u0131n stabilize edilmesinde muazzam bir rol oynad\u0131.<\/p>\n

Ald\u0131\u011f\u0131n\u0131z sa\u011fl\u0131k hizmeti ve tedaviyi nas\u0131l tan\u0131mlars\u0131n\u0131z?<\/strong>
\nSa\u011fl\u0131k hizmetim y\u0131llar i\u00e7inde \u00f6nemli \u00f6l\u00e7\u00fcde geli\u015fti. Pediatrik KF kliniklerindeki \u00f6nceki deneyimlerim, bak\u0131m\u0131mda aktif bir kat\u0131l\u0131mc\u0131 ve karar verici olma arzumla pek uyu\u015fmuyordu, ancak sonunda bir hasta olarak uzmanl\u0131\u011f\u0131ma de\u011fer veren ve aktif i\u015fbirli\u011fini te\u015fvik eden bir yeti\u015fkin KF klini\u011fine geldi\u011fim i\u00e7in \u015fansl\u0131y\u0131m. \u015eu anki sa\u011fl\u0131k ekibim ola\u011fan\u00fcst\u00fc ve hastal\u0131\u011f\u0131m\u0131n ilerlemi\u015f durumuna ra\u011fmen son birka\u00e7 y\u0131ld\u0131r beni stabil tutmaya yard\u0131mc\u0131 olduklar\u0131 i\u00e7in ortakl\u0131\u011f\u0131m\u0131z\u0131 takdir ediyorum. Mutlu, tatmin edici ve \u00fcretken bir hayat ya\u015famak, g\u00fczel yerler g\u00f6rmek, etraf\u0131m\u0131 sevdi\u011fim insanlarla \u00e7evrelemek ve d\u00fcnyaya etkili \u015fekillerde katk\u0131da bulunmak istiyorum. Ba\u015far\u0131l\u0131 bir tedavi, t\u00fcm bunlar\u0131 yapabilmemi sa\u011flayan sa\u011fl\u0131k hizmetlerine eri\u015febilmektir.<\/p>\n

\u0130la\u00e7 end\u00fcstrisi hakk\u0131ndaki d\u00fc\u015f\u00fcnceleriniz nelerdir?<\/strong>
\n\u00c7\u0131\u011f\u0131r a\u00e7an ila\u00e7 Kalydeco'nun 2012'de onaylanmas\u0131, belirli bir KF mutasyonuna sahip k\u00fc\u00e7\u00fck bir alt pop\u00fclasyon i\u00e7in hayat kurtar\u0131yor - ve bu da ila\u00e7\/biyoteknoloji end\u00fcstrisi sayesinde oluyor. \u0130nan\u0131lmaz \u015feyler yap\u0131yorlar; tedavileri bireysel genomik \u00f6zelliklere g\u00f6re ki\u015fiselle\u015ftiriyorlar ve bize ger\u00e7ek bir umut veriyorlar. Ancak hastalar fahi\u015f maliyetler nedeniyle bu ila\u00e7lara eri\u015femiyorsa bunun hi\u00e7bir \u00f6nemi yok. K\u00fc\u00e7\u00fck bir hastal\u0131k pop\u00fclasyonu oldu\u011fumuzu ve Ar-Ge'nin maliyetli ve riskli oldu\u011funu biliyorum, ancak ila\u00e7 ve biyoteknoloji end\u00fcstrileri, \u00e7al\u0131\u015fmalar\u0131n\u0131n kurtarabilece\u011fi insanlar\u0131, anneleri, babalar\u0131, k\u0131zlar\u0131, o\u011fullar\u0131 ve en iyi arkada\u015flar\u0131 d\u00fc\u015f\u00fcnmeli ve bu insanlar\u0131n ya\u015famak ve iyi ya\u015famak i\u00e7in umutsuzca ihtiya\u00e7 duyduklar\u0131 ila\u00e7lar\u0131 alabilmelerini sa\u011flamal\u0131d\u0131r.<\/p>\n

\u0130la\u00e7 \u015firketlerinden ne istersiniz?<\/strong>
\n\u0130la\u00e7 end\u00fcstrisinin, nadir hastal\u0131klar\u0131n nadir mutasyonlar\u0131 da dahil olmak \u00fczere nadir hastal\u0131klar\u0131 olanlar i\u00e7in yeni tedavilerin ve hatta tedavilerin geli\u015ftirilmesiyle u\u011fra\u015fmas\u0131n\u0131 \u00e7ok isterim. Kalydeco'nun geli\u015ftirilmesi ve onaylanmas\u0131 bunun m\u00fcmk\u00fcn oldu\u011funu kan\u0131tl\u0131yor. Ayr\u0131ca, ila\u00e7 geli\u015ftirme s\u00fcrecinin sonunda yeni tedavileri umutsuzca - benim durumumda nefeslerini tutarak - bekleyen insanlar\u0131 hat\u0131rlamalar\u0131n\u0131 ve onlar\u0131 s\u00fcrece ortak tasar\u0131mc\u0131lar ve ortaklar olarak dahil etmelerini istiyorum. Burada hepimiz ayn\u0131 \u015feyin pe\u015findeyiz - nefes alma ve t\u0131bbi ilerlemeler - ve birlikte \u00e7al\u0131\u015farak \u00e7ok daha fazla yol alaca\u011f\u0131z. Sonu\u00e7ta herkes derin bir nefesi hak ediyor, de\u011fil mi?<\/p>\n

\"Read<\/p>","protected":false},"excerpt":{"rendered":"

“Everyone Deserves A Deep Breath” Interview originally published in PharmaTimes Magazine and available here Emily Kramer-Golinkoff was six weeks old when she was diagnosed with cystic fibrosis. She is now 29, works in the social media and health innovation lab at Penn Medicine, and has set up a charity to raise funds for CF research… <\/p>\n

<\/div>\n

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