{"id":109450,"date":"2022-07-04T18:24:00","date_gmt":"2022-07-04T15:24:00","guid":{"rendered":"https:\/\/life.karpat.in.ua\/?p=109450"},"modified":"2022-07-04T17:33:59","modified_gmt":"2022-07-04T14:33:59","slug":"ukrajna-eloszor-kapta-meg-a-vilag-legdragabb-gyogyszeret-a-gerinc-eredetu-izomsorvadas-sma-kezelesere","status":"publish","type":"post","link":"https:\/\/life.karpat.in.ua\/?p=109450&lang=hu","title":{"rendered":"Ukrajna el\u0151sz\u00f6r kapta meg a vil\u00e1g legdr\u00e1g\u00e1bb gy\u00f3gyszer\u00e9t a gerinc eredet\u0171 izomsorvad\u00e1s (SMA) kezel\u00e9s\u00e9re"},"content":{"rendered":"\n

Az ukrajnai k\u00f3rh\u00e1zak t\u00f6bb mint 150 flakonnyi Spinraza gy\u00f3gyszert kaptak. A gerinc eredet\u0171 izomsorvad\u00e1sban (SMA) szenved\u0151 gyermekek kezel\u00e9s\u00e9re szolg\u00e1l\u00f3 gy\u00f3gyszerb\u0151l egy darab injekci\u00f3 100 ezer doll\u00e1rba ker\u00fcl.<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

A h\u00edrt Maria Karcsevics eg\u00e9szs\u00e9g\u00fcgyi miniszterhelyettes k\u00f6z\u00f6lte. Elmond\u00e1sa szerint az ukrajnai k\u00f3rh\u00e1zak el\u0151sz\u00f6r kapj\u00e1k meg t\u00e9r\u00edt\u00e9smentesen ezeket a gy\u00f3gyszereket a ritka betegs\u00e9gben szenved\u0151 gyermekek sz\u00e1m\u00e1ra.<\/p>\n\n\n\n

\u201eA mai nap t\u00falz\u00e1s n\u00e9lk\u00fcl egy nagyon fontos nap az ukr\u00e1n eg\u00e9szs\u00e9g\u00fcgy t\u00f6rt\u00e9nelm\u00e9ben. Nem csup\u00e1n dr\u00e1ga gy\u00f3gyszereket kaptunk, amelyek kor\u00e1bban Ukrajn\u00e1ban nem voltak el\u00e9rhet\u0151ek. A leg\u00e9rt\u00e9kesebbet kaptuk: lehet\u0151s\u00e9get, hogy megments\u00fck a ritka betegs\u00e9gben szenved\u0151 gyermekek \u00e9let\u00e9t. K\u00f6sz\u00f6nettel tartozunk azoknak az adom\u00e1nyoz\u00f3knak, akik lehet\u0151s\u00e9get adtak gyermekeinknek az \u00e9letre\u201d \u2013 nyilatkozta.<\/p>\n\n\n\n

SMA<\/strong><\/h2>\n\n\n\n

A gerinc eredet\u0171 izomsorvad\u00e1s (spinal muscular atrophy, SMA) egy ritka, genetikai eredet\u0171, progressz\u00edv \u00e9s gyakran hal\u00e1los betegs\u00e9g, amely a betegek j\u00e1r\u00f3k\u00e9pess\u00e9g\u00e9t, t\u00e1pl\u00e1lkoz\u00e1si k\u00e9pess\u00e9g\u00e9t, v\u00e9g\u00fcl pedig l\u00e9gz\u00e9si k\u00e9pess\u00e9g\u00e9t is \u00e9rinti. Ez a rokkants\u00e1ghoz vezet\u0151 \u00e9s gyakran hal\u00e1los kimenetel\u0171 betegs\u00e9g k\u00f6r\u00fclbel\u00fcl minden t\u00edzezredik embert \u00e9rinti, \u00e9s a csecsem\u0151k k\u00f6r\u00e9ben az egyik legf\u0151bb genetikai eredet\u0171 hal\u00e1loknak sz\u00e1m\u00edt. Ukrajn\u00e1ban t\u00f6bb mint 200 gyermek szenved a betegs\u00e9gben.<\/p>\n\n\n\n

Az SMA kezel\u00e9se<\/strong><\/h2>\n\n\n\n

Kor\u00e1bban nem l\u00e9tezett kezel\u00e9s az SMA-ra, 2016 december\u00e9ben viszont az Egyes\u00fclt \u00c1llamok \u00c9lelmiszer- \u00e9s Gy\u00f3gyszerfel\u00fcgyeleti Hat\u00f3s\u00e1ga (Food and Drug Administration, FDA) enged\u00e9lyezte a Biogen sz\u00e1m\u00e1ra az SMA kezel\u00e9s\u00e9re szolg\u00e1l\u00f3 els\u0151 \u00e9s egyetlen ter\u00e1pi\u00e1t, amelyet az\u00f3ta az Eur\u00f3pai Uni\u00f3ban, Jap\u00e1nban, Braz\u00edli\u00e1ban \u00e9s a vil\u00e1g m\u00e1s r\u00e9gi\u00f3iban is j\u00f3v\u00e1hagytak, \u00e9s amely eddig vil\u00e1gszerte betegek ezrein seg\u00edtett.<\/p>\n\n\n\n

<!– translatorid:vik3255 –><\/p>\n","protected":false},"excerpt":{"rendered":"

Az ukrajnai k\u00f3rh\u00e1zak t\u00f6bb mint 150 flakonnyi Spinraza gy\u00f3gyszert kaptak. A gerinc eredet\u0171 izomsorvad\u00e1sban (SMA) szenved\u0151 gyermekek kezel\u00e9s\u00e9re szolg\u00e1l\u00f3 gy\u00f3gyszerb\u0151l egy darab injekci\u00f3 100 ezer doll\u00e1rba ker\u00fcl.<\/p>\n","protected":false},"author":5,"featured_media":109445,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15,41,49,33],"tags":[1853,16956,185365],"class_list":["post-109450","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-a-nap-hirei","category-cikkek","category-hirek","category-ukrajna","tag-gyogyszer","tag-sma","tag-spinraza"],"_links":{"self":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/109450","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=109450"}],"version-history":[{"count":1,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/109450\/revisions"}],"predecessor-version":[{"id":109452,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/posts\/109450\/revisions\/109452"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=\/wp\/v2\/media\/109445"}],"wp:attachment":[{"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=109450"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=109450"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/life.karpat.in.ua\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=109450"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}