Sakarya E\u011fitim ve Ara\u015ft\u0131rma Hastanesi’nde hem\u015fire olarak g\u00f6rev yapan Damla Badur\u2019a v\u00fccudunun pek \u00e7ok yerinde t\u00fcm\u00f6r ve kist yapan VHL Sendromu te\u015fhisi konuldu.<\/p>\n\n\n\n
Tedavisi SEAH\u2019ta devam eden Badur i\u00e7in arkada\u015flar\u0131 valilik onayl\u0131 yard\u0131m kampanyas\u0131 ba\u015flatt\u0131. Damla Badur\u2019un tekrar sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 i\u00e7in de\u011feri yakla\u015f\u0131k 116 bin avro olan ilac\u0131n yurtd\u0131\u015f\u0131ndan temin edilmesi gerekiyor. Badur\u2019un yak\u0131nlar\u0131 ve arkada\u015flar\u0131 hastal\u0131\u011f\u0131n tedavisinde kullan\u0131lacak \u2018Welireg\u2019 isimli ilac\u0131n yurtd\u0131\u015f\u0131ndan temin edilmesi i\u00e7in ba\u015flat\u0131lan kampanyaya destek bekliyor.<\/p>\n\n\n\n
Sa\u011fl\u0131k \u00c7al\u0131\u015fanlar\u0131 ve Emeklileri Dernek Ba\u015fkan\u0131 Mahmure \u00c7olak D\u00fczenlenen kampanya y\u00f6nelik bas\u0131n a\u00e7\u0131klamas\u0131 yapt\u0131. Bas\u0131n a\u00e7\u0131klamas\u0131nda Vatan H\u00fcrriyet Derne\u011fi Ba\u015fkan\u0131 Ya\u015far Dursun, Vatan ve H\u00fcrriyet Derne\u011fi Genel Ba\u015fkan\u0131 Mustafa Murat Karahan, Sa\u011fl\u0131k \u00c7al\u0131\u015fanlar\u0131 ve Emeklileri Dernek Ba\u015fkan\u0131 Mahmure \u00c7olak, Dernek Ba\u015fkan Yard\u0131mc\u0131s\u0131 Kerim \u00c7atalba\u015f, Derne\u011fin Y\u00f6netim Kurulu \u00dcyeleri; Huriye Toker Zeynep Kezban K\u0131z\u0131lay, Onursal \u00dcyesi Ela Aya\u015f, DEVA Partisi Arifiye \u0130l\u00e7e Ba\u015fkan\u0131 Emine Kumru, Gaziantepliler Derne\u011fi Ba\u015fkan\u0131 Mehmet Durak\u2019ta haz\u0131r bulundu.\u00a0<\/p>\n\n\n\n
Sa\u011fl\u0131k \u00c7al\u0131\u015fanlar\u0131 ve Emeklileri Dernek Ba\u015fkan\u0131 Mahmure \u00c7olak, Bas\u0131n a\u00e7\u0131klamas\u0131nda \u015fu ifadelere yer verdi; \u201c\u00d6ncelikle deprem b\u00f6lgesinde vefat eden vatanda\u015flar\u0131m\u0131za Allah\u2019tan rahmet diliyor, yaral\u0131lara da acil \u015fifalar temennisinde bulunuyoruz, yak\u0131nlar\u0131na sab\u0131rlar diliyoruz. Bug\u00fcn burada Korucuk E\u011fitim Ara\u015ft\u0131rma Hastanesi\u2019nde g\u00f6z klini\u011finde \u00e7al\u0131\u015fan hem\u015fire arkada\u015f\u0131m\u0131za destek amac\u0131yla toplanm\u0131\u015f bulunuyoruz. Arkada\u015f\u0131m\u0131z\u0131n VAL Sendromu denen bir rahats\u0131zl\u0131\u011f\u0131 var. Dolay\u0131s\u0131yla uzun bir tedavi s\u00fcrecinden ge\u00e7iyor. Bu arkada\u015f\u0131m\u0131z\u0131n hastal\u0131\u011f\u0131n\u0131n tedavisinde kendisine yard\u0131mc\u0131 olacak ilac\u0131 da yurtd\u0131\u015f\u0131ndan temin etmek gerekiyor. Bu da yakla\u015f\u0131k 116 bin Euro de\u011ferinde bir ila\u00e7t\u0131r. \u0130lac\u0131n ad\u0131 Belzutifan\u2019d\u0131r. Bunu kullan\u0131rsa arkada\u015f\u0131m\u0131z tedavisinde \u00f6nemli bir yol kat edecektir. Bu hastal\u0131k, genetik ve aileden ge\u00e7en bir rahats\u0131zl\u0131kt\u0131r. Arkada\u015f\u0131m\u0131z\u0131n yard\u0131m i\u00e7in Valilikten onayl\u0131 bir izni bulunmaktad\u0131r. Biz de dernek olarak deste\u011fimizi sonuna kadar devam ettirece\u011fiz, yan\u0131nday\u0131z. Tek iste\u011fimiz Damla i\u00e7in bir an \u00f6nce tedaviye ula\u015fabilmesi ad\u0131na sesini duyurabilmek. Bundan dolay\u0131 toplumun her kesimine, t\u00fcm sivil toplum kurulu\u015flar\u0131na, duyarl\u0131 olan herkese sesleniyoruz: L\u00fctfen Damla Hem\u015fireye \u015fifa olal\u0131m ki O da ba\u015fkalar\u0131na \u015fifa da\u011f\u0131tabilsin! \u201c dedi.<\/p>\n\n\n\n
Mahmure \u00c7olak, konu\u015fmas\u0131n\u0131n devam\u0131nda ise \u201cVAL denen hastal\u0131k, v\u00fccudun i\u00e7 organlar\u0131nda ve v\u00fccudun her yerinde t\u00fcm\u00f6rel \u015fekilde kitleler olu\u015fturuyor. Bu beyinde, karaci\u011ferde, b\u00f6breklerde ve pankreaslarda bir\u00e7ok farkl\u0131 \u015fekilde meydana gelebiliyor. K\u0131sacas\u0131 ayn\u0131 anda bir\u00e7ok organda kistler olu\u015fturabiliyor. Dolay\u0131s\u0131yla bu hastal\u0131k arkada\u015f\u0131m\u0131z\u0131 \u00e7ok zor durumda b\u0131rakt\u0131. Bu hastal\u0131kla ilgili zaten \u00e7ok da eskiye dayal\u0131 bir tan\u0131 ve tedavi yoktur. Yeni koyulan bir te\u015fhistir ve tek bir ilac\u0131 vard\u0131r. Bu ila\u00e7 da 2021 y\u0131l\u0131nda FDA onayl\u0131 olarak 81 \u00fclkeye da\u011f\u0131t\u0131lm\u0131\u015ft\u0131r. Bu ilac\u0131 kullanan bir\u00e7ok hasta kistlerin, kanserli t\u00fcm\u00f6rlerin k\u00fc\u00e7\u00fcld\u00fc\u011f\u00fc ya da tamamen yok oldu\u011fu geribildirimini vermi\u015ftir. O y\u00fczden Damla hem\u015firenin de bu \u015fansa ve hakka sahip oldu\u011funu d\u00fc\u015f\u00fcn\u00fcrek, elimizden gelen deste\u011fi vermek ad\u0131na burada toplanm\u0131\u015f bulunmaktay\u0131z. Bizler ve sizler el ele verebilirsek ve bu dayan\u0131\u015fmay\u0131 b\u00fcy\u00fcltebilirsek Damla arkada\u015f\u0131m\u0131z\u0131 \u015fifaya kavu\u015fturabilece\u011fimizi d\u00fc\u015f\u00fcn\u00fcyoruz. Biz sonuna kadar, Damla Hem\u015firenin y\u00fcz\u00fc g\u00fclene kadar, bu hastal\u0131k ondan tamamen uzakla\u015fana kadar onun tamamen yan\u0131nday\u0131z. Ne kadar insana ula\u015fabilirsek o kadar \u00e7abuk tedavi olaca\u011f\u0131na inan\u0131yoruz, yard\u0131mlar\u0131n\u0131z\u0131 bekliyoruz\u201d diye s\u00f6yledi.<\/p>\n\n\n\n
Dernek Ba\u015fkan\u0131 Mahmure \u00c7olak ard\u0131ndan konu\u015fan Hem\u015fire Damla Bodur, \u201cMerhaba ben Damla Badur. VHL(Von Hippel Lindau) hastas\u0131y\u0131m. Bu hastal\u0131k; beyin-omrilik, g\u00f6z, b\u00f6brek, pankreas ba\u015fta olmak \u00fczere hayat\u00ee organlarda kist ve t\u00fcm\u00f6rler meydana getiriyor. Beynimde olu\u015fan t\u00fcm\u00f6r\u00fc(hemanjioblastom) doktorlar beyin ameliyat\u0131yla ald\u0131lar. \u015euan pankreas\u0131m kist dolu. S\u00fcrekli b\u00fcy\u00fcmeye devam ediyorlar. A\u011fr\u0131lar \u00e7ekiyorum, sindirim bozukluklar\u0131 ya\u015f\u0131yorum ve organlar\u0131m her ge\u00e7en g\u00fcn kanser olmaya daha \u00e7ok yakla\u015f\u0131yor. Ama \u00e7ok \u015f\u00fck\u00fcr Amerika\u2019da bu hastal\u0131\u011f\u0131n tedavisi bulundu ve Welireg(Belzutifan) adl\u0131 bu ila\u00e7 2021 y\u0131l\u0131nda FDA onay\u0131 ald\u0131. Bu ilac\u0131 alamazsam e\u011fer bu hastal\u0131k di\u011fer organlar\u0131mda da h\u0131zla t\u00fcm\u00f6rler olu\u015fturup beni onlarca ameliyata ve k\u00f6t\u00fc bir ya\u015fam\u0131n sonuna getirecek. Ama bu ilac\u0131 al\u0131rsam in\u015fallah iyile\u015fece\u011fim. Bu ilac\u0131 almaya madd\u00ee g\u00fcc\u00fcm el vermedi\u011fi i\u00e7in Valilik izinli ila\u00e7 yard\u0131m kampanyas\u0131 ba\u015flatt\u0131m. Almam gereken tedavinin \u00fccreti 116bin Euro. Sizlerin de deste\u011fi ile bu paray\u0131 toplay\u0131p tedavime ula\u015f\u0131p hastal\u0131\u011f\u0131n bana getirdi\u011fi a\u011f\u0131r y\u00fcklerden kurtulmak ve sa\u011fl\u0131kl\u0131 bir insan gibi ya\u015famama devam etmek istiyorum. Hepinize sonsuz minnettar\u0131m\u201d dedi.<\/p>\n\n\n\n
Valilik izinli kampanyan\u0131n \u0130ban bilgileri \u015fu \u015fekilde;<\/p>\n\n\n\n
\u0130ban: TRO40001002364623928025009<\/p>\n\n\n\n
Al\u0131c\u0131 ad\u0131: Damla Badur<\/p>\n\n\n\n
A\u00e7\u0131klama: VHLDAMLA<\/p>\n","protected":false},"excerpt":{"rendered":"
Sakarya E\u011fitim ve Ara\u015ft\u0131rma Hastanesi’nde hem\u015fire olarak g\u00f6rev yapan Damla Badur\u2019a v\u00fccudunun pek \u00e7ok yerinde t\u00fcm\u00f6r ve kist yapan VHL Sendromu te\u015fhisi konuldu. Tedavisi SEAH\u2019ta devam eden Badur i\u00e7in arkada\u015flar\u0131 valilik onayl\u0131 yard\u0131m kampanyas\u0131 ba\u015flatt\u0131. Damla Badur\u2019un tekrar sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 i\u00e7in de\u011feri yakla\u015f\u0131k 116 bin avro olan ilac\u0131n yurtd\u0131\u015f\u0131ndan temin edilmesi gerekiyor. Badur\u2019un yak\u0131nlar\u0131 ve […]<\/p>\n","protected":false},"author":1,"featured_media":6388,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5,9],"tags":[602,1963,2644],"class_list":["post-6387","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guncel","category-saglik","tag-damla-hemsire","tag-saglik-calisanlari-ve-emeklileri","tag-vhl-sendromu"],"_links":{"self":[{"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/posts\/6387","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/comments?post=6387"}],"version-history":[{"count":1,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/posts\/6387\/revisions"}],"predecessor-version":[{"id":6389,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/posts\/6387\/revisions\/6389"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/media\/6388"}],"wp:attachment":[{"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/media?parent=6387"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/categories?post=6387"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/haber.kocaalibilisim.com\/index.php\/wp-json\/wp\/v2\/tags?post=6387"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}