{"id":49934,"date":"2024-06-17T09:48:58","date_gmt":"2024-06-17T07:48:58","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=49934"},"modified":"2024-06-17T09:48:59","modified_gmt":"2024-06-17T07:48:59","slug":"vzacny-syndrom-dravetove-ohrozuje-pacienty-na-zivote","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=49934","title":{"rendered":"Vz\u00e1cn\u00fd syndrom Dravetov\u00e9 ohro\u017euje pacienty na \u017eivot\u011b"},"content":{"rendered":"\n

Na z\u00e1va\u017enou formu epilepsie upozorn\u00ed charitativn\u00ed akce<\/em><\/p>\n\n\n\n

Praha, 17. 6. 2024 \u2013 Des\u00edtky d\u011bt\u00ed v \u010cesku bojuj\u00ed se vz\u00e1cn\u00fdm neurologick\u00fdm onemocn\u011bn\u00edm, tzv. syndromem Dravetov\u00e9. Ten jim zp\u016fsobuje nejen \u010dast\u00e9 a dlouh\u00e9 epileptick\u00e9 z\u00e1chvaty, ale i probl\u00e9my s ch\u016fz\u00ed, ment\u00e1ln\u00ed retardaci nebo autismus. I kv\u016fli tomu pacienti pot\u0159ebuj\u00ed neust\u00e1lou p\u00e9\u010di rodi\u010d\u016f a bl\u00edzk\u00fdch. Na toto onemocn\u011bn\u00ed a s n\u00edm spojen\u00e9 n\u00e1strahy upozorn\u00ed akce EpicanaFest, kter\u00e1 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. Druh\u00fd ro\u010dn\u00edk charitativn\u00edho festivalu nab\u00eddne krom\u011b osv\u011bty i hudebn\u00ed vystoupen\u00ed a z\u00e1bavn\u00fd program pro d\u011bti. Akci po\u0159\u00e1d\u00e1 neziskov\u00e1 organizace EPICANA a startuje v ned\u011bli 23. \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. Abychom zv\u00fd\u0161ili pov\u011bdom\u00ed o t\u00e9to nemoci, po\u0159\u00e1d\u00e1me letos ji\u017e 2. ro\u010dn\u00edk EpicanaFestu,\u201c <\/em>vysv\u011btluje Lucie Miczov\u00e1, \u0159editelka a zakladatelka po\u0159\u00e1daj\u00edc\u00ed neziskov\u00e9 organizace EPICANA.<\/p>\n\n\n\n

\u201eOnemocn\u011bn\u00ed zcela zm\u011bn\u00ed chod cel\u00e9 rodiny a d\u011bti mnohdy vy\u017eaduj\u00ed p\u00e9\u010di 24 hodin denn\u011b \u2013 z\u00e1chvat toti\u017e m\u016f\u017ee p\u0159ij\u00edt kdykoliv. Nav\u00edc syndrom prov\u00e1z\u00ed nejenom \u010dast\u00e9 epileptick\u00e9 z\u00e1chvaty, ale i spousta dal\u0161\u00edch probl\u00e9m\u016f a\u00a0p\u0159idru\u017een\u00e9 diagn\u00f3zy. S\u00a0d\u011btmi se mus\u00ed neust\u00e1le pracovat a\u00a0d\u016fle\u017eit\u00e1 je tak\u00e9 jejich pravideln\u00e1 rehabilitace,\u201c<\/em> dod\u00e1v\u00e1 Miczov\u00e1, kter\u00e1 je sama matkou p\u011btilet\u00e9 Elenky, je\u017e nemoc\u00ed trp\u00ed. \u201eMus\u00edme dodr\u017eovat \u0159adu opat\u0159en\u00ed, abychom minimalizovali riziko z\u00e1chvatu. V\u00a0pr\u016fb\u011bhu Elen\u010dina sp\u00e1nku pou\u017e\u00edv\u00e1me p\u0159\u00edstroje, kter\u00e9 monitoruj\u00ed \u017eivotn\u00ed funkce a detekuj\u00ed p\u0159\u00edpadn\u00fd epileptick\u00fd z\u00e1chvat,\u201c <\/em>vysv\u011btluje Miczov\u00e1. Pr\u00e1v\u011b s\u00a0po\u0159\u00edzen\u00edm t\u011bchto finan\u010dn\u011b pom\u011brn\u011b n\u00e1kladn\u00fdch p\u0159\u00edstroj\u016f jej\u00ed neziskov\u00e1 organizace rodin\u00e1m pom\u00e1h\u00e1.<\/p>\n\n\n\n

EpicanaFest se kon\u00e1 v \u010dervnu, kter\u00fd je celosv\u011btov\u011b m\u011bs\u00edcem pov\u011bdom\u00ed o syndromu Dravetov\u00e9. Sou\u010d\u00e1st\u00ed programu bude i vystoupen\u00ed zp\u011bva\u010dky Terezy Balonov\u00e9, Objevu roku na lo\u0148sk\u00fdch Slav\u00edc\u00edch, nebo kapely Eddie Stoilow. D\u011bti si na akci zatan\u010d\u00ed se zp\u011bva\u010dkou BibiBum, u\u017eij\u00ed si p\u0159edstaven\u00ed kouzeln\u00edka a\u00a0p\u0159ipraveno pro n\u011b bude tak\u00e9 malov\u00e1n\u00ed na obli\u010dej. <\/p>\n\n\n\n

Jedn\u00edm z\u00a0host\u016f festivalu bude i neurolog z\u00a0Fakultn\u00ed nemocnice v Motole, jen\u017e n\u00e1v\u0161t\u011bvn\u00edk\u016fm p\u0159ibl\u00ed\u017e\u00ed, co v\u0161echno \u017eivot s\u00a0t\u00edmto vz\u00e1cn\u00fdm onemocn\u011bn\u00edm obn\u00e1\u0161\u00ed. N\u00e1v\u0161t\u011bvn\u00edci se mohou t\u011b\u0161it i na prohl\u00eddku sanitn\u00edho vozu. \u201eHlavn\u011b si ale budou moci vyzkou\u0161et, jak se p\u0159i epileptick\u00e9m z\u00e1chvatu poskytuje prvn\u00ed pomoc, co\u017e mnohdy m\u016f\u017ee zachr\u00e1nit \u017eivot,\u201c <\/em>dopl\u0148uje \u0159editelka organizace EPICANA.<\/p>\n\n\n\n

EpicanaFest bude m\u00edt i charitativn\u00ed aspekt. \u201eV\u00fdt\u011b\u017ekem ze vstupn\u00e9ho, kter\u00e9 je dobrovoln\u00e9, 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. To 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<\/em> se mohou podpo\u0159it a sd\u00edlet radosti i strasti, kter\u00e9 \u017eivot s epileptikem p\u0159in\u00e1\u0161\u00ed,\u201c <\/em>zd\u016fraz\u0148uje Lucie Miczov\u00e1. V\u00edce o akci najdete na facebookov\u00fdch str\u00e1nk\u00e1ch<\/a> akce nebo Instagramu<\/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 epilepsi\u00ed. Zam\u011b\u0159uje se tak\u00e9 na advoka\u010dn\u00ed \u010dinnost a 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 apod. 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","protected":false},"excerpt":{"rendered":"

Na z\u00e1va\u017enou formu epilepsie upozorn\u00ed charitativn\u00ed akce Praha, 17. 6. 2024 \u2013 Des\u00edtky d\u011bt\u00ed v \u010cesku bojuj\u00ed se vz\u00e1cn\u00fdm neurologick\u00fdm onemocn\u011bn\u00edm, tzv. syndromem Dravetov\u00e9. Ten jim zp\u016fsobuje […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":49936,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17],"tags":[],"class_list":["post-49934","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-kultura"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49934","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=49934"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49934\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/49936"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49934"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49934"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49934"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}