Diyarbak\u0131r\u2019da 7 Eyl\u00fcl D\u00fcnya DMD fark\u0131ndal\u0131k g\u00fcn\u00fc nedeniyle bir araya gelen, genetik ge\u00e7i\u015fli kas erimesi hastal\u0131\u011f\u0131 olan Duchene M\u00fcsc\u00fclar Distrofi\u2019ye (DMD) sahip \u00e7ocuklar ve hasta yak\u0131nlar\u0131 tedavileri i\u00e7in yetkililerden destek istedi.<\/p>\n
DMD Kas Hastal\u0131\u011f\u0131 ile M\u00fccadele Derne\u011fi temsilcileri ve aileler 7 Eyl\u00fcl D\u00fcnya DMD Fark\u0131ndal\u0131k G\u00fcn\u00fc nedeniyle 15 Temmuz \u015eehitler Park\u0131nda bir araya gelerek bas\u0131n a\u00e7\u0131klamas\u0131 yapt\u0131. G\u00fcneydo\u011fu ve Do\u011fu Anadolu DMD M\u00fccadele Derne\u011fi Temsilcisi Ahmet \u00d6zkul, T\u00fcrkiye\u2019de 5 bin \u00e7ocu\u011fun bu hastal\u0131\u011f\u0131n pen\u00e7esinde oldu\u011funu s\u00f6yledi. DMD\u2019lilerin tekerlekli sandalyeye mahkum oldu\u011funu belirten \u00d6zkul, \u201cBug\u00fcn D\u00fcnya Duchenne M\u00fcsk\u00fcler Distorofi (DMD) Fark\u0131ndal\u0131k G\u00fcn\u00fc. DMD \u00e7ocukluk d\u00f6neminde ba\u015flayan ve ilerleyen \u00e7ocuklar\u0131n fiziksel t\u00fcm hareketlerini zorla\u015ft\u0131ran, tekerlekli sandalyeye mahkum eden, solunum ve kalp kas\u0131 etkilenmesiyle 20\u2019li ya\u015flarda ya\u015fam\u0131n\u0131 tehdit eden genetik ge\u00e7i\u015fli kas erimesi hastal\u0131\u011f\u0131d\u0131r. Tedavi konusunda art\u0131k umudumuz daha g\u00fc\u00e7l\u00fc. D\u00fcnyada y\u00fczlerce bilimsel \u00e7al\u0131\u015fma DMD i\u00e7in tedaviye umut oluyor. Devletimizden ve halk\u0131m\u0131zdan beklentimiz DMD\u2019nin fark\u0131na var\u0131lmas\u0131, fark\u0131ndal\u0131k olu\u015fmas\u0131d\u0131r. Biliyoruz ki, ac\u0131lar payla\u015f\u0131ld\u0131k\u00e7a azal\u0131r, mutluluklar payla\u015f\u0131nca \u00e7o\u011fal\u0131r. \u00dclkemizde 5 binden fazla \u00e7ocu\u011fumuz bu hastal\u0131\u011f\u0131n pen\u00e7esinde. Biz aileler olarak toplumsal duyarl\u0131l\u0131k fark\u0131ndal\u0131k bekliyoruz. \u00dclkemizdeki insanlar\u0131n vicdan\u0131na g\u00fcvendi\u011fimiz i\u00e7in bunu talep ediyoruz. Devletimizden, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131ndan, Cumhurba\u015fkan\u0131m\u0131z Recep Tayyip Erdo\u011fan\u2019dan duyarl\u0131l\u0131k bekliyoruz. D\u00fcnyada bilimsel tedavi denemeleri son noktaya gelmi\u015fken \u00fclkemizde DMD konusunda uzman hekimlerimiz mevcutken, \u00fclkemizde tedaviye y\u00f6nelik devletin deste\u011fi maalesef yetersizdir. Devletimizin sorumluluk almas\u0131n\u0131, \u00e7ocuklar\u0131m\u0131z\u0131n bu tehlikeli hastal\u0131ktan kurtulmas\u0131 i\u00e7in \u00fclkemizde bu konuda uzman hekimlerin desteklenmesini, bilimsel \u00e7al\u0131\u015fmalar\u0131n yap\u0131lmas\u0131 i\u00e7in destek bekliyoruz\u201d dedi.<\/p>\n
\u201cKas hastal\u0131klar\u0131n\u0131n te\u015fhisi ve tedavi merkezleri kurulmas\u0131n\u0131 istiyoruz\u201d<\/p>\n
DMD hastal\u0131\u011f\u0131na \u00e7are bulunmas\u0131 ve erken te\u015fhis konulmas\u0131 i\u00e7in hastal\u0131\u011fa kulak verilmesini aktaran \u00d6zkul, \u201cBir\u00e7ok hastal\u0131ktan biliyoruz ki tedavi yurt d\u0131\u015f\u0131nda geli\u015fmekte ve y\u00fcksek rakamlarla pazarlanmakta. \u00dclkemiz bunlar\u0131 kar\u015f\u0131lamakta zorlanmaktad\u0131r. Ya\u015fad\u0131\u011f\u0131m\u0131z ekonomik krizle bir kez daha g\u00f6r\u00fcyoruz ki, milli, yerli \u00fcretim her alanda devletimiz ve toplumumuzun lehinedir. Bundan kaynakl\u0131 buradan ba\u015fta Cumhurba\u015fkan\u0131m\u0131 olmak \u00fczere devletimiz ilgili birimlerini, \u00fclkemizde bu konuda uzman hekimlerimizn bilimsel \u00e7al\u0131\u015fmalar\u0131 i\u00e7in uygun ortamlar\u0131 olu\u015fturmaya \u00e7a\u011f\u0131r\u0131yoruz. Devletimiz, halk\u0131m\u0131z\u0131 7 Eyl\u00fcl D\u00fcnya DMD Fark\u0131ndal\u0131k G\u00fcn\u00fcnde biz ailelerin sesini duymaya \u00e7a\u011f\u0131r\u0131yoruz\u201d diye konu\u015ftu.<\/p>\n
Aileler daha sonra ellerindeki balonlar\u0131 u\u00e7urarak “\u00c7ocuklar \u00d6lmesin” sloganlar\u0131 att\u0131.<\/p>\n","protected":false},"excerpt":{"rendered":"
D\u0130YARBAKIR\u2019DA 7 EYL\u00dcL D\u00dcNYA DMD FARKINDALIK G\u00dcN\u00dc NEDEN\u0130YLE B\u0130R ARAYA GELEN, GENET\u0130K GE\u00c7\u0130\u015eL\u0130 B\u0130R KAS ER\u0130MES\u0130 HASTALI\u011eI OLAN DUCHENE M\u00dcSC\u00dcLAR D\u0130STROF\u0130’YE (DMD) SAH\u0130P \u00c7OCUKLAR VE HASTA YAKINLARI TEDAV\u0130LER\u0130 \u0130\u00c7\u0130N YETK\u0130L\u0130LERDEN DESTEK \u0130STED\u0130.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[14,20],"tags":[85295,25439,46765,15732,13197,14669,7407],"class_list":["post-1284363","post","type-post","status-publish","format-standard","hentry","category-saglik","category-turkiye","tag-dmd","tag-care","tag-erimesi","tag-hastaligi","tag-icin","tag-istediler","tag-kas"],"_links":{"self":[{"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=\/wp\/v2\/posts\/1284363","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1284363"}],"version-history":[{"count":0,"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=\/wp\/v2\/posts\/1284363\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1284363"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1284363"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erzhaber.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1284363"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}