D\u00fcnya Duchenne Fark\u0131ndal\u0131k G\u00fcn\u00fc kapsam\u0131nda DMD kas hastas\u0131 \u00e7ocuklar\u0131n aileleri Rize 15 Temmuz Demokrasi ve Cumhuriyet Meydan\u0131\u2019nda bir eylem ger\u00e7ekle\u015ftirdi.<\/p>\n
Seslerini duyurmak isteyen DMD kas hastas\u0131 \u00e7ocuklar\u0131n aileleri d\u00fcd\u00fck \u00e7ald\u0131, \u00e7ocuklar\u0131n\u0131n eskitemedi\u011fi ayakkab\u0131lar\u0131 meydana b\u0131rakt\u0131.<\/p>\n
D\u00fcnya Duchenne Fark\u0131ndal\u0131k G\u00fcn\u00fc kapsam\u0131nda ger\u00e7ekle\u015fen eylemde DMD kas hastas\u0131 \u00e7ocuklar\u0131n aileleri ad\u0131na konu\u015fan Elif Mahmut \u201cBug\u00fcn burada toplanan bu kalabal\u0131k D\u00fcnya Duchenne Fark\u0131ndal\u0131k G\u00fcn\u00fc i\u00e7in beraber. Bizler, DMD kas erimesi hastas\u0131 \u00e7ocuklar\u0131n aileleriyiz. DMD (Duchenne Musk\u00fcler Distrofi), nadir hastal\u0131k olarak an\u0131lsa da say\u0131ca her ge\u00e7en g\u00fcn artan, ilerleyici ve \u00e7ocuklar\u0131m\u0131z\u0131n hayat\u0131na kast eden bir kas erimesi hastal\u0131\u011f\u0131. \u00dclkemizde 5 bini a\u015fk\u0131n \u00e7ocuk, gen\u00e7 bu hastal\u0131\u011f\u0131n meydana getirdi\u011fi sorunlarla m\u00fccadele ediyor. DMD\u2019li \u00e7ocuklar\u0131m\u0131z ne di\u011fer \u00e7ocuklar gibi y\u00fcr\u00fcyebiliyor, ko\u015fabiliyor ne de hastal\u0131\u011f\u0131n ilerledi\u011fi evrelerde nefes al\u0131yor. Ge\u00e7en zamanla kaslar\u0131 hayatlar\u0131 eriyen kas hastas\u0131 \u00e7ocuklar\u0131m\u0131z gelecekleriyle ilgili hayaller kurmak aileleriyle beraber kalmak istiyorlar! D\u00fcnya\u2019da DMD i\u00e7in tedavi umudumuzu y\u00fckselten bir\u00e7ok ila\u00e7 ve tedavi denemeleri ba\u015far\u0131l\u0131 bir \u015fekilde devam ederken biz \u00fclkemizde \u00e7ocuklar\u0131m\u0131z i\u00e7in art\u0131k yeterli bak\u0131m ve tedavi \u015fartlar\u0131n\u0131n sa\u011flanmas\u0131n\u0131 istiyoruz. Bundan sonra hastanede yo\u011fun bak\u0131mda uygulanan yanl\u0131\u015f m\u00fcdahaleler sonucunda \u00e7ocuklar\u0131m\u0131z\u0131n bizden kopar\u0131lmas\u0131n\u0131 istemiyoruz\u201d dedi.<\/p>\n
“DMD Kas Hastal\u0131\u011f\u0131 Merkezi istiyoruz”<\/p>\n
T\u00fcrkiye\u2019deki t\u00fcm DMD\u2019li \u00e7ocuklar\u0131n ad\u0131na seslendi\u011fini ve T\u00fcrkiye\u2019de bir DMD Kas Hastal\u0131klar\u0131 Merkezi kurulmas\u0131n\u0131 istediklerini dile getiren Mahmut \u201cYurt d\u0131\u015f\u0131ndaki bak\u0131m \u015fartlar\u0131n\u0131, sosyal haklar\u0131n burada da m\u00fcmk\u00fcn k\u0131l\u0131nmas\u0131n\u0131 ve hastal\u0131\u011f\u0131m\u0131z\u0131n bilinmesini istiyoruz. Yurt d\u0131\u015f\u0131nda geli\u015ftirilen tedavilerin \u00fclkemizde uygulanmas\u0131 i\u00e7in gerekli ortam\u0131n olu\u015fturulmas\u0131n\u0131, T\u00fcrkiye\u2019nin farkl\u0131 b\u00f6lgelerinde, Anadolu\u2019daki DMD kas hastas\u0131 \u00e7ocuk ve gen\u00e7lerin hayat standartlar\u0131n\u0131 y\u00fckseltecek onlar\u0131 ya\u015fama ba\u011flayacak kas hastal\u0131klar\u0131 merkezlerini istiyoruz. \u00dclkemizde neden \u00e7ocuklar\u0131m\u0131z g\u00f6z g\u00f6re g\u00f6re harcan\u0131yor? Evlatlar\u0131m\u0131z\u0131n ya\u015fam hakk\u0131n\u0131 istiyoruz! Sosyal devletin s\u00f6zde kalmay\u0131p icraatta olmas\u0131n\u0131 istiyoruz. Sizlere inanmak ve g\u00fcvenmek istiyoruz. Devletimizin ve toplumun deste\u011fi sayesinde bilimsel tedavi y\u00f6ntemlerini \u00fclkemize getirebilir, DMD kas hastas\u0131 \u00e7ocuklar\u0131m\u0131z\u0131n bak\u0131m ko\u015fullar\u0131n\u0131 iyile\u015ftirebiliriz. Sonu\u00e7lanmak \u00fczere olan bilimsel tedavi \u00e7al\u0131\u015fmalar\u0131na zaman kaybetmeksizin ula\u015farak, bir\u00e7ok \u00e7ocu\u011fumuza ve ailesine umut olabilirsiniz. Binlerce \u00e7ocu\u011fu ve ailesini etkileyen bu y\u0131k\u0131c\u0131 hastal\u0131\u011f\u0131n tedavisine, ilk kez bu kadar yakla\u015f\u0131ld\u0131. Y\u00fcr\u00fcmek isteyen, ko\u015fmak ve ya\u015famak isteyen t\u00fcm DMD\u2019li \u00e7ocuklar i\u00e7in devletimizi g\u00f6reve, \u00f6\u011fretmenlerimizi \u00e7ocuklar\u0131m\u0131z\u0131 sahiplenmeye, sa\u011fl\u0131k \u00e7al\u0131\u015fanlar\u0131n\u0131 DMD hakk\u0131nda daha bilgili olmaya, toplumumuzu daha duyarl\u0131 olmaya, siz bas\u0131n \u00e7al\u0131\u015fanlar\u0131n\u0131 \u00e7ocuklar\u0131m\u0131z\u0131 daha fazla g\u00fcndem yapmaya \u00e7a\u011f\u0131r\u0131yoruz. Destek olun DMD\u2019yi yenelim\u201d \u015feklinde konu\u015ftu.<\/p>\n
“DMD \u00d6l\u00fcmc\u00fcl bir kas hastal\u0131\u011f\u0131”<\/p>\n
Abd\u00fclkadir Kurt isimli DMD hastas\u0131 babas\u0131 ise \u201cDMD hastal\u0131\u011f\u0131 2-3 ya\u015f\u0131nda tan\u0131s\u0131 konulan, 8-9 ya\u015f\u0131nda tekerlekli sandalyeye mahkum b\u0131rakan, maalesef \u00fclkemizde 17-18 ya\u015f\u0131nda vefatla sonu\u00e7lanan \u00f6l\u00fcmc\u00fcl bir kas hastal\u0131\u011f\u0131. Amerika\u2019da Avrupa\u2019da ciddi sonu\u00e7lara ula\u015f\u0131lm\u0131\u015f tedavileri var. \u00dclkemiz bu \u00e7al\u0131\u015fmalarda biraz gecikti. Sadece bu \u00e7al\u0131\u015fmalar\u0131n uygulanabilece\u011fi merkezler istiyoruz. Genetik tedavilerin \u00e7ocuklar\u0131m\u0131za yap\u0131labilece\u011fi merkezler, \u00e7ocuklar\u0131m\u0131z\u0131n fizik tedavilerinin daha rahat yap\u0131labilece\u011fi merkezler istiyoruz\u201d dedi.<\/p>\n
“\u00c7ocuklar\u0131m\u0131z ko\u015fabilen ayakkab\u0131 istiyor”<\/p>\n
\u00c7ocuklar\u0131n\u0131n kendilerinden ko\u015fabilen ayakkab\u0131 istedi\u011fini dile getiren Kurt \u201c\u00c7ocuklar\u0131m\u0131z ya\u015fas\u0131n istiyoruz. Eskitemedi\u011fi ayakkab\u0131lar\u0131 buraya b\u0131rakt\u0131k. Biz \u00e7ocuklar\u0131m\u0131za ayakkab\u0131 al\u0131yoruz, sadece numaras\u0131 b\u00fcy\u00fcd\u00fc\u011f\u00fc zaman de\u011fi\u015ftiriyoruz, hi\u00e7 eskimiyorlar. Bizim evlerimizde bir s\u00fcr\u00fc yeni, kullan\u0131lmam\u0131\u015f ayakkab\u0131lar var. Aya\u011f\u0131 b\u00fcy\u00fcy\u00fcnce yenisini al\u0131yoruz, eskimiyor bizim ayakkab\u0131lar\u0131m\u0131z. Ko\u015fabilen ayakkab\u0131 isteyen \u00e7ocuklar\u0131m\u0131z var, onlara anlatam\u0131yoruz\u201d ifadelerini kulland\u0131.<\/p>\n","protected":false},"excerpt":{"rendered":"
D\u00dcNYA DUCHENNE FARKINDALIK G\u00dcN\u00dc KAPSAMINDA DMD KAS HASTASI \u00c7OCUKLARIN A\u0130LELER\u0130 R\u0130ZE 15 TEMMUZ DEMOKRAS\u0130 VE CUMHUR\u0130YET MEYDANI\u2019NDA B\u0130R EYLEM GER\u00c7EKLE\u015eT\u0130RD\u0130.<\/p>\n","protected":false},"author":1,"featured_media":200993,"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":[29316,10828,13765,50606,8769],"class_list":["post-200992","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ayakkabilari","tag-biraktilar","tag-cocuklarinin","tag-eskitemedigi","tag-meydana"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/09\/cocuklarinin-eskitemedigi-ayakkabilari-meydana-biraktilar_6412b11.jpg?fit=1000%2C693","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-QhO","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/200992","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=200992"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/200992\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/200993"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=200992"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=200992"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=200992"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}