{"id":21198,"date":"2025-09-24T16:00:12","date_gmt":"2025-09-24T14:00:12","guid":{"rendered":"http:\/\/www.drustvo-distrofikov.si\/?p=21198"},"modified":"2025-10-02T11:35:11","modified_gmt":"2025-10-02T09:35:11","slug":"sporocilo-za-javnost-po-usklajevalnem-posvetovanju-invalidskih-organizacij-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-2-2-2-2-2-3-3-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-2-3-3-2-2-2-131","status":"publish","type":"post","link":"http:\/\/www.drustvo-distrofikov.si\/?p=21198","title":{"rendered":"25. september – dan Friedreichove ataksije"},"content":{"rendered":"

25. september je posve\u010den Friedreichovi ataksiji.<\/p>\n

Friedreichova ataksija (FA) je redko dedno \u017eiv\u010dno mi\u0161i\u010dno obolenje. Prvi simptomi se najpogosteje pojavijo med 5. in 15. letom starosti, pogosto pa so povezani z motnjo koordinacije in ravnote\u017eja, nezanesljivo hojo, te\u017eavami pri teku in nespretnostjo pri finih opravilih. Drugi znaki so tudi spotikanje, treso\u010de roke, ote\u017eeno govorjenje. Ker na prvi pogled oseba s FA deluje le \u00bbmalo \u0161torasta\u00ab, je v nekaterih primerih obolenje te\u017eje prepoznati.<\/p>\n

Pri obravnavi obolelih s FA je pomemben multidisciplinarni pristop.<\/p>\n

Kako je \u017eiveti s FA, sta v leto\u0161njem letu javno spregovorila na\u0161a \u010dlana Nike Rappl Vencelj v tiskani prilogi Redke bolezni<\/a> , v \u010dasopisu Ve\u010der,<\/a> v \u00a0Nedeljskem dnevniku <\/a>in\u00a0 na portalu\u00a024ur.com<\/a>, ter Brane Lavri\u010d v \u010dasopisu Ve\u010der<\/a> .<\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

25. september je posve\u010den Friedreichovi ataksiji. Friedreichova ataksija (FA) je redko dedno \u017eiv\u010dno mi\u0161i\u010dno obolenje. Prvi simptomi se najpogosteje pojavijo med 5. in 15. letom starosti, pogosto pa so povezani z motnjo koordinacije in ravnote\u017eja, nezanesljivo hojo, te\u017eavami pri teku in nespretnostjo pri finih opravilih….<\/p>\n","protected":false},"author":3,"featured_media":21199,"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-21198","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-novice"],"publishpress_future_action":{"enabled":false,"date":"2026-06-05 23:38:20","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\/21198","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\/3"}],"replies":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=21198"}],"version-history":[{"count":8,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21198\/revisions"}],"predecessor-version":[{"id":21218,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/posts\/21198\/revisions\/21218"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=\/wp\/v2\/media\/21199"}],"wp:attachment":[{"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21198"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21198"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.drustvo-distrofikov.si\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21198"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}