{"id":18229,"date":"2018-09-06T21:11:23","date_gmt":"2018-09-06T20:11:23","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=18229"},"modified":"2018-09-07T08:12:39","modified_gmt":"2018-09-07T07:12:39","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=18229","title":{"rendered":"Svetovni dan ozave\u0161\u010danja o Duchennovi mi\u0161i\u010dni distrofiji"},"content":{"rendered":"<p>Duchennova mi\u0161i\u010dna distrofija (DMD) je prirojena, neozdravljiva in postopoma napredujo\u010da okvara mi\u0161ic. Gre za hudo progresivno in redko genetsko pogojeno bolezen, ki se pojavi v otro\u0161tvu, najpogosteje pri de\u010dkih. Vzrok za bolezen je spremenjen gen, ki nosi zapis za beljakovino distrofin. Ta je vezana na celi\u010dno membrano mi\u0161ice in je zelo pomembna za njeno stabilnost. Posledica pomanjkanja ali odsotnosti distrofina vodi v pogoste po\u0161kodbe mi\u0161ic in njihov propad.<\/p>\n<p><strong>Klju\u010dno je zgodnje odkrivanje bolezni<\/strong><br \/>\nZaradi genetskega vzroka Duchennova mi\u0161i\u010dna distrofija \u0161e vedno ni ozdravljiva, pri\u010dakovana \u017eivljenjska doba bolnikov z DMD obi\u010dajno ni ve\u010d kot 30 let. Bolezen hitro napreduje in bolniki izgubljajo gibalno neodvisnost med 6. in 13. letom starosti. Zelo pomembno je zgodnje odkritje bolezni, saj se s pravo\u010dasnim zdravljenjem upo\u010dasni njeno napredovanje. Zakasnitev poslab\u0161anja bolezni pa je za de\u010dke in njihove dru\u017eine izjemno pomembna.<\/p>\n<p>Ve\u010d si lahko preberete v prilo\u017eenih letakih:<\/p>\n<ul>\n<li><a href=\"http:\/\/www.drustvo-distrofikov.si\/wp-content\/uploads\/2018\/09\/DMD-Letak2018-1.pdf\" target=\"_blank\" rel=\"noopener\">DMD-Letak2018-1<\/a><\/li>\n<li><a href=\"http:\/\/www.drustvo-distrofikov.si\/wp-content\/uploads\/2018\/09\/DMD-Letak2018-2.pdf\" target=\"_blank\" rel=\"noopener\">DMD-Letak2018-2<\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><strong>Vir:<\/strong>\u00a0https:\/\/www.medis.si\/za-medije\/novice\/novice\/2017\/danes-je-svetovni-dan-ozavescanja-o-duchennovi-misicni-distrofiji\/<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Duchennova mi\u0161i\u010dna distrofija (DMD) je prirojena, neozdravljiva in postopoma napredujo\u010da okvara mi\u0161ic. Gre za hudo progresivno in redko genetsko pogojeno bolezen, ki se pojavi v otro\u0161tvu, najpogosteje pri de\u010dkih. Vzrok za bolezen je spremenjen gen, ki nosi zapis za beljakovino distrofin. Ta je vezana na&#8230;<\/p>\n","protected":false},"author":1,"featured_media":18230,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[187],"tags":[],"class_list":["post-18229","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-05-21 04:28:22","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/18229","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=18229"}],"version-history":[{"count":4,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/18229\/revisions"}],"predecessor-version":[{"id":18241,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/18229\/revisions\/18241"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/18230"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18229"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18229"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18229"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}