{"id":40185,"date":"2023-06-13T11:43:49","date_gmt":"2023-06-13T09:43:49","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=40185"},"modified":"2023-06-13T11:44:53","modified_gmt":"2023-06-13T09:44:53","slug":"epicanafest-bude-v-sobotu-pripomene-syndromem-dravetove","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=40185","title":{"rendered":"EpicanaFest bude v sobotu. P\u0159ipomene syndrom Dravetov\u00e9"},"content":{"rendered":"\n

Nejenom \u010dast\u00e9 a dlouh\u00e9 epileptick\u00e9 z\u00e1chvaty, ale i probl\u00e9my s ch\u016fz\u00ed, ment\u00e1ln\u00ed retardaci nebo autismus. To v\u0161e zp\u016fsobuje vz\u00e1cn\u00fd syndrom Dravetov\u00e9. V \u010cesku s n\u00edm bojuj\u00ed des\u00edtky d\u011bt\u00ed, kter\u00e9 od prvn\u00edho roku sv\u00e9ho \u017eivota opakovan\u011b prod\u011bl\u00e1vaj\u00ed velk\u00e9 z\u00e1chvaty. <\/strong><\/p>\n\n\n\n

Na toto z\u00e1va\u017en\u00e9 neurologick\u00e9 onemocn\u011bn\u00ed upozorn\u00ed EpicanaFest, kter\u00fd se bude konat u p\u0159\u00edle\u017eitosti Mezin\u00e1rodn\u00edho dne pov\u011bdom\u00ed o syndromu Dravetov\u00e9 v pra\u017esk\u00e9m are\u00e1lu Gutovka. Charitativn\u00ed festival nab\u00eddne krom\u011b osv\u011bty i hudebn\u00ed vystoupen\u00ed a z\u00e1bavn\u00fd program pro d\u011bti. Akce, kterou po\u0159\u00e1d\u00e1 neziskov\u00e1 organizace EPICANA, odstartuje v sobotu 24. \u010dervna ve 13 hodin.<\/strong><\/p>\n\n\n\n

\u201eSyndrom Dravetov\u00e9 je velmi vz\u00e1cn\u00e1 a t\u011b\u017ek\u00e1 forma epilepsie, kterou lid\u00e9 moc neznaj\u00ed, a tak je pot\u0159eba o n\u00ed mluvit. Abychom zv\u00fd\u0161ili pov\u011bdom\u00ed o t\u00e9to nemoci, rozhodli jsme se pro ve\u0159ejnost uspo\u0159\u00e1dat EpicanaFest,\u201c <\/em>vysv\u011btluje Lucie Miczov\u00e1, \u0159editelka po\u0159\u00e1daj\u00edc\u00ed neziskov\u00e9 organizace EPICANA. <\/p>\n\n\n\n

\u201e\u017divot s touto nemoc\u00ed je hodn\u011b slo\u017eit\u00fd a fungov\u00e1n\u00ed rodin ovliv\u0148uje po v\u0161ech str\u00e1nk\u00e1ch. Onemocn\u011bn\u00ed toti\u017e prov\u00e1z\u00ed nejenom \u010dast\u00e9 epileptick\u00e9 z\u00e1chvaty, ale i spousta dal\u0161\u00edch probl\u00e9m\u016f a p\u0159idru\u017een\u00e9 diagn\u00f3zy. S d\u011btmi se mus\u00ed neust\u00e1le pracovat a d\u016fle\u017eit\u00e1 je tak\u00e9 jejich pravideln\u00e1 rehabilitace,\u201c<\/em> dod\u00e1v\u00e1 Miczov\u00e1. EpicanaFest se kon\u00e1 v \u010dervnu, kter\u00fd je celosv\u011btov\u011b m\u011bs\u00edcem pov\u011bdom\u00ed o syndromu Dravetov\u00e9. <\/p>\n\n\n\n

Na prvn\u00ed ro\u010dn\u00edk festivalu doraz\u00ed krom\u011b rodin nemocn\u00fdch d\u011bt\u00ed i neurolog z Fakultn\u00ed nemocnice Motol, jen\u017e n\u00e1v\u0161t\u011bvn\u00edk\u016fm vysv\u011btl\u00ed, co v\u0161echno \u017eivot s t\u00edmto vz\u00e1cn\u00fdm onemocn\u011bn\u00edm obn\u00e1\u0161\u00ed. Chyb\u011bt zde nebudou ani policist\u00e9 a z\u00e1chran\u00e1\u0159i. \u201eDosp\u011bl\u00ed i d\u011bti si budou moci nejenom prohl\u00e9dnout policejn\u00ed a sanitn\u00ed v\u016fz, ale hlavn\u011b vyzkou\u0161et, jak se p\u0159i epileptick\u00e9m z\u00e1chvatu poskytuje prvn\u00ed pomoc. Na m\u00edst\u011b s n\u00e1mi bude i spole\u010dnost s asisten\u010dn\u00edmi psy, kter\u00e1 p\u0159edvede v\u00fdcvik ps\u016f pro lidi s epilepsi\u00ed,\u201c <\/em>dopl\u0148uje \u0159editelka organizace EPICANA. <\/p>\n\n\n\n

Festival budou moderovat herec Michal Slan\u00fd a redaktorka Mark\u00e9ta \u010cepick\u00e1 Da\u0148helov\u00e1. Sou\u010d\u00e1st\u00ed programu bude n\u011bkolik hudebn\u00edch vystoupen\u00ed, d\u011bti si na akci u\u017eij\u00ed p\u0159edstaven\u00ed kouzeln\u00edka nebo bal\u00f3nkovou show a p\u0159ipraveno pro n\u011b bude tak\u00e9 malov\u00e1n\u00ed na obli\u010dej. <\/p>\n\n\n\n

EpicanaFest nav\u00edc bude m\u00edt i charitativn\u00ed aspekt. \u201eV\u00fdt\u011b\u017ekem ze vstupn\u00e9ho, kter\u00e9 je dobrovoln\u00e9, toti\u017e podpo\u0159\u00edme dal\u0161\u00ed ro\u010dn\u00edk na\u0161eho \u201aepit\u00e1bora\u2018. Pravideln\u011b se na n\u011bm setk\u00e1vaj\u00ed cel\u00e9 rodiny d\u011bt\u00ed s r\u016fzn\u00fdmi neurologick\u00fdmi probl\u00e9my, co\u017e je pro v\u0161echny velk\u00fdm p\u0159\u00ednosem, proto\u017ee si spole\u010dn\u011b u\u017eij\u00ed t\u00fdden pln\u00fd z\u00e1bavy a navz\u00e1jem se poznaj\u00ed,\u201c<\/em> zd\u016fraz\u0148uje Lucie Miczov\u00e1.<\/p>\n\n\n\n

V\u00edce o akci najdete na https:\/\/www.epicana.cz\/epicana-projekty.html<\/a>.<\/p>\n\n\n\n

O organizaci EPICANA<\/strong><\/p>\n\n\n\n

Neziskov\u00e1 organizace EPICANA z.\u00fa. m\u00e1 za c\u00edl pom\u00e1hat d\u011btem i dosp\u011bl\u00fdm s neurologick\u00fdm onemocn\u011bn\u00edm epilepsie, zejm\u00e9na se syndromem Dravetov\u00e9. Organizuje kulturn\u00ed, charitativn\u00ed a vzd\u011bl\u00e1vac\u00ed akce na podporu lid\u00ed s epilepsi\u00ed a po\u0159\u00e1d\u00e1 \u201eepit\u00e1bory\u201c a jin\u00e1 setk\u00e1n\u00ed cel\u00fdch rodin d\u011bt\u00ed nemocn\u00fdch s epilepsi\u00ed. Zam\u011b\u0159uje se tak\u00e9 na c\u00edlenou finan\u010dn\u00ed pomoc nemocn\u00fdm d\u011btem formou podpory p\u0159i po\u0159izov\u00e1n\u00ed pot\u0159ebn\u00fdch kompenza\u010dn\u00edch pom\u016fcek, rehabilitac\u00ed, odleh\u010dovac\u00edch slu\u017eeb nebo l\u00e9ka\u0159sk\u00fdch z\u00e1krok\u016f nehrazen\u00fdch zdravotn\u00edmi poji\u0161\u0165ovnami. V\u00edce na www.epicana.cz<\/a>.  <\/p>\n\n\n\n

O syndromu Dravetov\u00e9<\/strong><\/p>\n\n\n\n

Syndrom Dravetov\u00e9 je vz\u00e1cn\u00e1 a velmi z\u00e1va\u017en\u00e1 forma farmakorezistentn\u00ed epilepsie. Tento epileptick\u00fd syndrom neprov\u00e1zej\u00ed jen \u010dast\u00e9 a dlouh\u00e9 epileptick\u00e9 z\u00e1chvaty, jak to b\u00fdv\u00e1 u b\u011b\u017en\u00fdch druh\u016f epilepsie, ale i dal\u0161\u00ed p\u0159idru\u017een\u00e9 diagn\u00f3zy (nap\u0159. hypotonie, probl\u00e9my s ch\u016fz\u00ed, ment\u00e1ln\u00ed retardace, autismus apod.). Syndrom Dravetov\u00e9 byl poprv\u00e9 pops\u00e1n v roce 1978 profesorkou Charlotte Dravet ve Francii.<\/p>\n\n\n\n

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

Nejenom \u010dast\u00e9 a dlouh\u00e9 epileptick\u00e9 z\u00e1chvaty, ale i probl\u00e9my s ch\u016fz\u00ed, ment\u00e1ln\u00ed retardaci nebo autismus. To v\u0161e zp\u016fsobuje vz\u00e1cn\u00fd syndrom Dravetov\u00e9. V \u010cesku s n\u00edm bojuj\u00ed des\u00edtky d\u011bt\u00ed, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":40186,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-40185","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40185","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=40185"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40185\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/40186"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40185"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40185"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40185"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}