Kayseri\u2019de iki karde\u015fini hayatlar\u0131n\u0131n en verimli \u00e7a\u011f\u0131nda yata\u011fa mahkum eden Hantington hastal\u0131\u011f\u0131n\u0131n belirtilerini 3 y\u0131ld\u0131r ya\u015fayan ve ka\u011f\u0131t toplayarak karde\u015flerine bakmaya \u00e7al\u0131\u015fan 33 ya\u015f\u0131ndaki Cesur \u00d6zbulduk, “Annemin ve \u00f6z ye\u011fenimin vefat\u0131na neden olan bu hastal\u0131\u011f\u0131n tedavisini olabilmek i\u00e7in yard\u0131m eli uzat\u0131lmas\u0131n\u0131 bekliyoruz” dedi.<\/p>\n
40 ya\u015f\u0131ndaki Muasar ve 45 ya\u015f\u0131ndaki \u00dcnsal \u00d6zbulduk, Hantington hastal\u0131\u011f\u0131 nedeniyle yata\u011fa ba\u011f\u0131ml\u0131 ya\u015f\u0131yor. Hastal\u0131k nedeniyle yata\u011fa ba\u011f\u0131ml\u0131 olan karde\u015flere 65 ya\u015f\u0131ndaki babalar\u0131 Ali Ekber \u00d6zbulduk bak\u0131yor. Hastal\u0131\u011f\u0131n belirtilerini 3 y\u0131ld\u0131r ya\u015fayan 33 ya\u015f\u0131ndaki karde\u015fleri Cesur \u00d6zbulduk ise ka\u011f\u0131t toplayarak karde\u015flerine bakmaya \u00e7al\u0131\u015f\u0131yor.<\/p>\n
Genetik n\u00f6rolojik hastal\u0131k Hantington hastal\u0131\u011f\u0131 ile 1986 y\u0131l\u0131ndan beri m\u00fccadele ettiklerini s\u00f6yleyen Cesur \u00d6zbulduk, “Annemi ve ye\u011fenimi bu hastal\u0131k nedeniyle kaybettik. Bu hastal\u0131ktan kurtulmak ve kendi ayaklar\u0131m\u0131z\u0131n \u00fczerinde durmak istiyoruz” diye konu\u015ftu.<\/p>\n
Sokaklarda el arabas\u0131 ile ka\u011f\u0131t toplayarak karde\u015flerine bakmaya \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 s\u00f6yleyen \u00d6zbulduk, “Karde\u015flerimi yata\u011fa mahkum eden hastal\u0131\u011f\u0131n belirtileri bende 3 y\u0131l \u00f6nce ba\u015flad\u0131. Ben de tedavi olmak istiyorum. Bu konuda b\u00fcy\u00fcklerimizden ve yetkililerden yard\u0131m eli uzatmalar\u0131n\u0131 bekliyoruz. Benim hi\u00e7bir sosyal g\u00fcvencem yok. Sabah gidip ak\u015fam gelece\u011fim d\u00fczenli bir i\u015fim yok. Ka\u011f\u0131t toplayarak g\u00fcnde 20 TL ancak kazan\u0131yorum. Bak\u0131m paras\u0131 al\u0131yoruz ama evimiz kira oldu\u011fu i\u00e7in ge\u00e7inmemize yetmiyor. Ev sahibi yeni y\u0131lda 450 TL olan ev kiras\u0131n\u0131 500 TL\u2019ye \u00e7\u0131kard\u0131. Bu kiray\u0131 dahi \u00f6demekte g\u00fc\u00e7l\u00fck \u00e7ekiyoruz” dedi.<\/p>\n
Liseyi bitirdikten sonra yata\u011fa ba\u011fl\u0131 kalan 40 ya\u015f\u0131ndaki Muasar ve evlenip bir \u00e7ocuk sahibi olduktan sonra yatalak olan 45 ya\u015f\u0131ndaki \u00dcnsal\u2019\u0131n bak\u0131mlar\u0131n\u0131 yapan baba Ali Ekber \u00d6zbulduk ise, “\u00c7ocuklar\u0131m 2006 y\u0131l\u0131nda bu Hantington hastal\u0131\u011f\u0131na yakaland\u0131. 2013 y\u0131l\u0131ndan beri de yatalaklar. Temizliklerini, tra\u015flar\u0131n\u0131 ve yemeklerini ben kendim yaparak bak\u0131yorum. Bazen di\u011fer \u00e7ocuklar\u0131m gelerek destek oluyor” dedi.<\/p>\n
\u0130l Sa\u011fl\u0131k M\u00fcd\u00fcrl\u00fc\u011f\u00fcne ba\u011fl\u0131 Evde Sa\u011fl\u0131k Hizmetleri ekibi taraf\u0131ndan iki hasta yata\u011f\u0131 verildi\u011fini s\u00f6yleyen \u00d6zbulduk, “H\u00fck\u00fcmetimizden, milletimizden raz\u0131y\u0131m. Ne zaman telefon a\u00e7sak Sa\u011fl\u0131k M\u00fcd\u00fcrl\u00fc\u011f\u00fc yard\u0131ma geliyor ve bizi hastaneye g\u00f6t\u00fcr\u00fcyor. Bu ya\u015fad\u0131\u011f\u0131m\u0131z rahatl\u0131k devletimizin sayesinde. Devletimiz olmasa inan ki burada ba\u011f\u0131ra ba\u011f\u0131ra \u00f6l\u00fcr\u00fcz. Allah raz\u0131 olsun hepsinden” diye konu\u015ftu.<\/p>\n
“\u0130ki \u00e7ocu\u011fa bakmak zor de\u011fil” diyen baba \u00d6zbulduk, “Kald\u0131rabiliyorum, g\u00fcc\u00fcm kuvvetim iyi, \u00e7ocuklar\u0131 kald\u0131rabiliyorum, bak\u0131mlar\u0131n\u0131 yapabiliyorum. Anne taraf\u0131ndan gelen bir Hantington hastal\u0131\u011f\u0131. Bir\u00e7ok doktora g\u00f6t\u00fcrd\u00fcm ama bu derdin \u00e7aresi \u015fu diyen bir doktor olmad\u0131. Bu derdin bir \u00e7aresini bilen varsa, m\u00fcmk\u00fcnse bana yard\u0131mc\u0131 olsun. Ba\u015fka bir iste\u011fim yok. Bu hastal\u0131k di\u011fer o\u011flumda da var. O da bu hastal\u0131\u011fa yakalanmadan bize bir tedavi yolu bulunmas\u0131n\u0131 veya yard\u0131m eli uzat\u0131lmas\u0131n\u0131 bekliyoruz. Muasar liseyi bitirdikten sonra, \u00dcnsal ise evlendi ve bir \u00e7ocu\u011fu oldu. Hastal\u0131\u011fa yakaland\u0131ktan ve yata\u011fa ba\u011f\u0131ml\u0131 olduktan sonra e\u015finden bo\u015fand\u0131. \u00dcnsal\u2019\u0131n \u00e7ocu\u011fu da bu hastal\u0131k nedeniyle hayat\u0131n\u0131 kaybetti” dedi.<\/p>\n
Huntington (Huntington\u2019s Disease: HD) hastal\u0131\u011f\u0131, n\u00f6ro-dejeneratif, yani n\u00f6ronlar\u0131n yap\u0131s\u0131n\u0131 bozan ve bu sebeple kas koordinasyonunun yitirilmesine, alg\u0131sal becerilerin kayb\u0131na ve zihinsel erken ya\u015flanmaya sebep olan \u00f6l\u00fcmc\u00fcl bir genetik hastal\u0131k. Hastal\u0131\u011f\u0131n eski ad\u0131 “Huntington Koresi”dir. “Huntington”, hastal\u0131\u011f\u0131 1872 y\u0131l\u0131nda ilk kez tan\u0131mlayan Dr. George Huntington\u2019\u0131n soyad\u0131ndan gelir. “Kore” s\u00f6zc\u00fc\u011f\u00fc ise, Yunanca\u2019da “dans etmek” anlam\u0131na gelir. Hastalar, istemsiz olarak kol ve bacaklar\u0131n\u0131 a\u015f\u0131r\u0131 miktarda hareket ettirdikleri i\u00e7in \u00e7ok eskiden bu \u015fekilde tan\u0131mlanm\u0131\u015ft\u0131r. Fakat s\u00f6zc\u00fc\u011f\u00fcn k\u00fc\u00e7\u00fck d\u00fc\u015f\u00fcr\u00fcc\u00fc oldu\u011fu d\u00fc\u015f\u00fcn\u00fclerek art\u0131k bu \u015fekilde an\u0131lmamakta, “Huntington” hastal\u0131\u011f\u0131 olarak bilinmektedir.<\/p>\n","protected":false},"excerpt":{"rendered":"
40 YA\u015eINDAK\u0130 MUASAR VE 45 YA\u015eINDAK\u0130 \u00dcNSAL \u00d6ZBULDUK’U HAYATLARININ EN VER\u0130ML\u0130 \u00c7A\u011eINDA YATA\u011eA MAHKUM EDEN HANT\u0130NGTON HASTALI\u011eININ BEL\u0130RT\u0130LER\u0130N\u0130 3 YILDIR YA\u015eAYAN, KA\u011eIT TOPLAYARAK KARDE\u015eLER\u0130NE BAKMAYA \u00c7ALI\u015eAN 33 YA\u015eINDAK\u0130 CESUR \u00d6ZBULDUK, “ANNEM\u0130N VE \u00d6Z YE\u011eEN\u0130M\u0130N VEFATINA NEDEN OLAN BU HASTALI\u011eIN TEDAV\u0130S\u0130N\u0130 OLAB\u0130LMEK \u0130\u00c7\u0130N YARDIM EL\u0130 UZATILMASINI BEKL\u0130YORUZ” DED\u0130.<\/p>\n","protected":false},"author":1,"featured_media":250532,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[1073,49286,2393,21061,14598,32663,4390,58707,15612],"class_list":["post-250531","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-dusmek","tag-eden","tag-hastaligin","tag-istemiyor","tag-kardeslerini","tag-mahkum","tag-pencesine","tag-yataga"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2020\/01\/ozel-kardeslerini-yataga-mahkum-eden-hastaligin-pencesine-dusmek-istemiyor_aa2750c.jpg?fit=1000%2C562","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-13aP","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/250531","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/comments?post=250531"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/250531\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/250532"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=250531"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=250531"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=250531"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}