{"id":36131,"date":"2022-06-01T03:18:04","date_gmt":"2022-06-01T00:18:04","guid":{"rendered":"https:\/\/kutaybilen.com.tr\/?p=36131"},"modified":"2022-06-01T03:18:04","modified_gmt":"2022-06-01T00:18:04","slug":"ruhi-cenet-sma-hastasi-bir-bebegin-bir-gununu-anlatti","status":"publish","type":"post","link":"https:\/\/kutaybilen.com.tr\/?p=36131","title":{"rendered":"Ruhi \u00c7enet, SMA Hastas\u0131 Bir Bebe\u011fin Bir G\u00fcn\u00fcn\u00fc Anlatt\u0131"},"content":{"rendered":"<p>SMA, epey ender g\u00f6r\u00fclen ve ilerleyerek <strong>\u00f6l\u00fcmc\u00fcl<\/strong> hale gelen bir kas hastal\u0131\u011f\u0131. Farkl\u0131 ya\u015f k\u00fcmelerinde ortaya \u00e7\u0131kan d\u00f6rt farkl\u0131 tipi var lakin bilhassa <strong>tip 1 ve tip 2 SMA<\/strong>, bebekken ortaya \u00e7\u0131k\u0131yor ve tesirleri epeyce \u015fiddetli seyrediyor.<\/p>\n<p>SMA az g\u00f6r\u00fclen bir hastal\u0131k olmas\u0131na kar\u015f\u0131n, son birka\u00e7 ayd\u0131r ismini toplumsal medyada s\u0131k\u00e7a duydu\u011fumuz bir hastal\u0131k. Bunun sebebi ise <em><strong>SMA hastas\u0131 <\/strong><\/em>bebeklerin ailelerinin ba\u015flatt\u0131klar\u0131 ba\u011f\u0131\u015f kampanyalar\u0131. Zolgensma isimli bir gen tedavisi i\u00e7in ba\u011f\u0131\u015f toplayan aileler, bu tedaviyi \u00e7ocuklar\u0131 i\u00e7in <strong>son umut<\/strong> olarak g\u00f6r\u00fcyorlar.<\/p>\n<p><b>Tek tedavi Zolgensma m\u0131? <\/b><\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.webtekno.com\/images\/editor\/default\/0002\/96\/b2dbf1e413529032961169ae155443d0bc9215ef.jpeg\"\/><\/p>\n<p>SMA hastas\u0131 \u00e7ocuklar i\u00e7in tek tedavi Zolgensma de\u011fil. Alternatif bir tedavi tekni\u011fi olan Spinraza da tesirli bir ila\u00e7 olarak an\u0131l\u0131yor ve bu hastal\u0131k ile u\u011fra\u015fta <strong>geli\u015ftirilen birinci ila\u00e7<\/strong>. Hayat uzunlu\u011fu her y\u0131l d\u00f6rt doz formunda uygulanan bu ila\u00e7, \u00fclkemizde devlet taraf\u0131ndan kar\u015f\u0131lan\u0131yor. Fakat hastalar\u0131n ilac\u0131 alabilmeleri i\u00e7in her bir doz sonras\u0131 \u00f6l\u00e7\u00fcmlenebilir <strong>geli\u015fme kaydetmesi<\/strong> gerekiyor. Aksi takdirde hastalar bir sonraki dozu alam\u0131yor.<\/p>\n<p><b>Ruhi \u00c7enet, yay\u0131nlad\u0131\u011f\u0131 g\u00f6r\u00fcnt\u00fcde ailelerin ve SMA hastas\u0131 minik Miran&#8217;\u0131n ya\u015fad\u0131\u011f\u0131 zorluklar\u0131 g\u00f6zler \u00f6n\u00fcne seriyor:<\/b><\/p>\n<p><div><\/div>\n<\/p>\n<p>Toplumsal medyada SMA hastalar\u0131 i\u00e7in ba\u011f\u0131\u015f kampanyalar\u0131n\u0131n yan\u0131nda bu hususta <strong>bilin\u00e7lendirme<\/strong> i\u00e7in de pek \u00e7ok ki\u015fi elini ta\u015f\u0131n alt\u0131na koydu. \u00dcnl\u00fc isimler bu mevzuda payla\u015f\u0131mlar yapt\u0131lar, yay\u0131nc\u0131lar ve YouTuber&#8217;lar <strong>ba\u011f\u0131\u015f yay\u0131nlar\u0131<\/strong> d\u00fczenledi. <\/p>\n<p>Ruhi \u00c7enet de SMA hastas\u0131 bir bebe\u011fin ve ailesinin ya\u015fad\u0131\u011f\u0131 zorluklar\u0131 g\u00f6zler \u00f6n\u00fcne sererek, <strong>\u00e7ocuklar\u0131n\u0131n rahat nefes almas\u0131 i\u00e7in <\/strong>her yolu denemek isteyen ailelerin \u00e7aresizli\u011fini hepimizle payla\u015fm\u0131\u015f ve ailelerin sesi olmu\u015f oldu. Zolgensma tedavisi ve SMA hakk\u0131nda daha fazlas\u0131na g\u00f6z atmak i\u00e7in buraya t\u0131klayarak Zolgensma ile ilgili yaz\u0131m\u0131za ula\u015fabilirsiniz. Buraya t\u0131klayarak ise Miran bebek i\u00e7in a\u00e7\u0131lan Instagram sayfas\u0131na ula\u015fabilirsiniz.<\/p>\n<div> <\/div>\n","protected":false},"excerpt":{"rendered":"<p>SMA, epey ender g\u00f6r\u00fclen ve ilerleyerek \u00f6l\u00fcmc\u00fcl hale gelen bir kas hastal\u0131\u011f\u0131. Farkl\u0131 ya\u015f k\u00fcmelerinde ortaya \u00e7\u0131kan d\u00f6rt farkl\u0131 tipi var lakin &#8230;<\/p>\n","protected":false},"author":1,"featured_media":36132,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[855],"tags":[5510,5511],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/36131"}],"collection":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=36131"}],"version-history":[{"count":1,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/36131\/revisions"}],"predecessor-version":[{"id":36133,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/posts\/36131\/revisions\/36133"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=\/wp\/v2\/media\/36132"}],"wp:attachment":[{"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36131"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36131"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kutaybilen.com.tr\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36131"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}