{"id":20185,"date":"2015-03-02T05:24:31","date_gmt":"2015-03-02T04:24:31","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=20185"},"modified":"2015-03-02T05:33:26","modified_gmt":"2015-03-02T04:33:26","slug":"den-vzacnych-onemocneni-pripomina-problemy-pacientu","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=20185","title":{"rendered":"Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed p\u0159ipom\u00edn\u00e1 probl\u00e9my pacient\u016f"},"content":{"rendered":"

O sv\u00e9 nemoci se n\u011bkte\u0159\u00ed pacienti dozv\u00ed opo\u017ed\u011bn\u011b, maj\u00ed toti\u017e n\u011bkter\u00e9 z 8000 vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, je\u017e se vyskytuj\u00ed v populaci n\u011bkdy i jen u p\u00e1r lid\u00ed. <\/strong><\/p>\n

Prakti\u010dt\u00ed l\u00e9ka\u0159i maj\u00ed s jejich rozpozn\u00e1n\u00edm mal\u00e9 zku\u0161enosti. Tak\u00e9 okol\u00ed nem\u00edv\u00e1 pro tyto pacienty pochopen\u00ed, dost\u00e1vaj\u00ed se tak \u010dasto do izolace, \u0159ekl \u010cTK m\u00edstop\u0159edseda \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO) Ren\u00e9 B\u0159e\u010d\u0165an.<\/p>\n

„Nezbytn\u00fdm krokem je centralizace l\u00e9\u010dby. Je zapot\u0159eb\u00ed soust\u0159edit na jednom m\u00edst\u011b kapacity, a\u0165 u\u017e jde o samotn\u00e9 l\u00e9ka\u0159e, nebo o technick\u00e9 z\u00e1zem\u00ed, v p\u0159\u00edpad\u011b vz\u00e1cn\u00fdch onemocn\u011bn\u00ed i nap\u0159\u00ed\u010d hranicemi st\u00e1t\u016f,“ uvedl.<\/p>\n

Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed p\u0159ibli\u017euje probl\u00e9my pacient\u016f ve\u0159ejnosti. Byl vyhl\u00e1\u0161en poprv\u00e9 29. \u00fanora 2008, zvoleno bylo vz\u00e1cn\u00e9 datum, kter\u00e9 se opakuje jen jednou za \u010dty\u0159i roky. V nep\u0159estupn\u00fdch letech se posouv\u00e1.<\/p>\n

Probl\u00e9my se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi se podle B\u0159e\u010d\u0165ana poj\u00ed pr\u00e1v\u011b s jejich n\u00edzk\u00fdm v\u00fdskytem. Pokud je na okrese jedin\u00fd pacient s danou nemoc\u00ed, nen\u00ed divu, \u017ee praktick\u00fd l\u00e9ka\u0159 onemocn\u011bn\u00ed nerozezn\u00e1, nebo po\u0161le pacienta k nespr\u00e1vn\u00e9mu specialistovi. Nav\u00edc jsou p\u0159\u00edznaky nespecifick\u00e9, a tak m\u016f\u017ee doj\u00edt k z\u00e1m\u011bn\u011b diagn\u00f3zy.<\/p>\n

\u010cAVO vytvo\u0159ilo ve spolupr\u00e1ci s N\u00e1rodn\u00edm koordina\u010dn\u00edm centrem pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed dlouhodob\u00fd projekt v\u010dasn\u00e9 diagnostiky. Na pomoc l\u00e9ka\u0159\u016fm i pacient\u016fm provozuje konzulta\u010dn\u00ed mail help@vzacna-onemocneni.cz.<\/p>\n

Na webu www.denvzacnychonemocneni.cz p\u0159edstavuje ka\u017ed\u00fd den jednu nemoc. Pt\u00e1 se pacient\u016f, co pro n\u011b \u017eivot s t\u00edmto onemocn\u011bn\u00edm znamen\u00e1, jak jej zvl\u00e1daj\u00ed a co jim pom\u00e1h\u00e1. „S neznalost\u00ed se \u010dasto poj\u00ed nepochopen\u00ed okol\u00ed, nez\u00e1jem, obavy. Tak se vytv\u00e1\u0159ej\u00ed mezi lidmi bari\u00e9ry. Chceme, aby bari\u00e9r bylo co nejm\u00e9n\u011b,“ vysv\u011btlila p\u0159edsedkyn\u011b \u010cAVO Anna Arellanesov\u00e1.<\/p>\n

Za vz\u00e1cn\u00e9 se ozna\u010duje onemocn\u011bn\u00ed, kter\u00fdm trp\u00ed m\u00e9n\u011b ne\u017e p\u011bt lid\u00ed z 10.000. V \u010cesku je zhruba 20.000 t\u011bchto pacient\u016f, v Evrop\u011b kolem 30 milion\u016f. Nej\u010dast\u011bji jde o vrozen\u00e9 v\u00fdvojov\u00e9 vady, d\u011bdi\u010dn\u00e9 poruchy metabolismu a vz\u00e1cn\u00e9 n\u00e1dory. V\u011bt\u0161ina t\u011bchto nemoc\u00ed m\u00e1 genetick\u00fd p\u016fvod. Rozv\u00edjej\u00ed se u\u017e p\u0159ed narozen\u00edm, t\u0159i \u010dtvrtiny p\u0159\u00edpad\u016f se projev\u00ed v d\u011btstv\u00ed. Zhruba 30 procent pacient\u016f um\u00edr\u00e1 p\u0159ed p\u00e1t\u00fdm rokem \u017eivota.<\/p>\n

K vyhled\u00e1v\u00e1n\u00ed vrozen\u00fdch nemoc\u00ed zavedlo \u010cesko v roce 2009 novorozeneck\u00fd screening. Z kapky krve se odhal\u00ed 13 ze 45 rozpoznateln\u00fdch nemoc\u00ed. Screening i l\u00e9\u010dbu hrad\u00ed zdravotn\u00ed poji\u0161\u0165ovny. Screening je sou\u010d\u00e1st\u00ed N\u00e1rodn\u00ed strategie pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed na roky 2010 a\u017e 2020, kter\u00e1 m\u00e1 za c\u00edl zefektivnit diagnostiku i l\u00e9\u010dbu.<\/p>\n","protected":false},"excerpt":{"rendered":"

O sv\u00e9 nemoci se n\u011bkte\u0159\u00ed pacienti dozv\u00ed opo\u017ed\u011bn\u011b, maj\u00ed toti\u017e n\u011bkter\u00e9 z 8000 vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, je\u017e se vyskytuj\u00ed v populaci n\u011bkdy i jen u p\u00e1r […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-20185","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/20185","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=20185"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/20185\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20185"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20185"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20185"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}