{"id":30556,"date":"2018-06-01T14:23:16","date_gmt":"2018-06-01T12:23:16","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30556"},"modified":"2018-06-01T14:23:16","modified_gmt":"2018-06-01T12:23:16","slug":"deti-s-epilepsii-maluji-obrazy-na-vystavu","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30556","title":{"rendered":"D\u011bti s epilepsi\u00ed maluj\u00ed obrazy na v\u00fdstavu"},"content":{"rendered":"<p><strong>Startuje 6. ro\u010dn\u00edk sout\u011b\u017ee \u201eL\u00edb\u00ed se ti, mami?\u201c ur\u010deny\u0301 pro d\u011bti s epilepsi\u00ed a jejich rodi\u010de. Do 20. z\u00e1\u0159\u00ed mohou pos\u00edlat na adresu organizace EpiStop obr\u00e1zky sv\u00e9ho obl\u00edben\u00e9ho zv\u00ed\u0159ete, \u010dinnosti nebo zkr\u00e1tka \u010dehokoliv, co jim v posledn\u00ed dob\u011b vzalo dech. V\u00edt\u011bzov\u00e9 se mohou t\u011b\u0161it na profesion\u00e1ln\u00ed sadu pro v\u00fdtvarn\u00edky a v\u0161ichni \u00fa\u010dastn\u00edci pak dostanou mal\u00fd d\u00e1rek k dal\u0161\u00edmu tvo\u0159en\u00ed. V\u0161echna d\u00edla d\u011bt\u00ed pak organiz\u00e1to\u0159i vystav\u00ed v t\u00fddnu od 27. 9. do 7. 10. v prostor\u00e1ch Europarku v pra\u017esk\u00fdch \u0160t\u011brboholech.<\/strong><br \/>\n<!--more--><br \/>\n\u201eZa vznikem t\u00e9to ojedin\u011bl\u00e9 sout\u011b\u017ee st\u00e1lo p\u0159\u00e1n\u00ed zm\u00edrnit ka\u017edodenn\u00ed obavy a starosti rodi\u010d\u016f d\u011bt\u00ed nemocn\u00fdch epilepsi\u00ed a zm\u011bnit nez\u00e1jem okol\u00ed a soci\u00e1ln\u00edho syst\u00e9mu obecn\u011b. Chceme uk\u00e1zat mal\u00fdm pacient\u016fm i jejich rodin\u00e1m p\u0159\u00edzniv\u011bj\u0161\u00ed tv\u00e1\u0159 na\u0161\u00ed spole\u010dnosti,\u201c \u0159\u00edk\u00e1 z\u00e1stupce organiz\u00e1tora MUDr. Hana Foitov\u00e1, jednatelka spole\u010dnosti UCB. V minul\u00fdch ro\u010dn\u00edc\u00edch se sout\u011b\u017ee z\u00fa\u010dastnilo celkem 129 d\u011bt\u00ed, loni nejv\u00edce zabodovala osmilet\u00e1 Ad\u00e9la s obr\u00e1zkem \u201e\u017delva vrouben\u00e1 \u017dofka\u201c. Obr\u00e1zky ze v\u0161ech ro\u010dn\u00edk\u016f jsou k vid\u011bn\u00ed na str\u00e1nce <a href=\"http:\/\/www.libisetimami.cz\" rel=\"noopener\" target=\"_blank\">www.libisetimami.cz<\/a>, stejn\u011b jako pravidla a podm\u00ednky sout\u011b\u017ee.<\/p>\n<p>Epilepsie je nej\u010dast\u011bj\u0161\u00ed chronickou nemoc\u00ed \u010desk\u00fdch d\u011bt\u00ed, tr\u00e1p\u00ed p\u0159ibli\u017en\u011b 20 000 z nich. \u010casto se projevuje u kojenc\u016f. Do 15 let v\u011bku prod\u011blalo n\u011bjakou formu z\u00e1chvatu ka\u017ed\u00e9 dvac\u00e1t\u00e9 d\u00edt\u011b. Ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f jde v\u0161ak o z\u00e1chvat ojedin\u011bl\u00fd. D\u011bti a jejich rodi\u010de mnohdy v\u00edce ne\u017e nemoc tr\u00e1p\u00ed postoj okol\u00ed. \u201eD\u00edt\u011b p\u0159i epileptick\u00e9m z\u00e1chvatu nemus\u00ed padat, t\u0159\u00e1st se ani m\u00edt poru\u0161en\u00e9 v\u011bdom\u00ed. Nap\u0159\u00edklad u kojenc\u016f se m\u016f\u017ee epilepsie projevovat neobvykle, a proto se h\u016f\u0159e pozn\u00e1v\u00e1. D\u00edt\u011b se nap\u0159\u00edklad schoul\u00ed do klub\u00ed\u010dka, rozhod\u00ed ruce, na prvn\u00ed pohled to m\u016f\u017ee vypadat jako \u00falek, ale je to projev nemoci. Jin\u00e9 d\u011bti se zase jen na p\u00e1r vte\u0159in \u201ezakoukaj\u00ed\u201c a ve v\u00fd\u010dtu projev\u016f epileptick\u00fdch z\u00e1chvat\u016f bychom mohli dlouho pokra\u010dovat,\u201c upozor\u0148uje d\u011btsky\u0301 neurolog a specialista na d\u011btskou epilepsii prof. MUDr. Pavel Kr\u0161ek, Ph.D.<\/p>\n<p>O tom, jak je n\u011bkdy t\u011b\u017ek\u00e9 epilepsii rozeznat, by mohli vypr\u00e1v\u011bt rodi\u010de osmilet\u00e9 Kl\u00e1rky, u kter\u00e9 se prvn\u00ed p\u0159\u00edznaky epilepsie objevily ve 3,5 letech p\u0159ed n\u00e1vratem z letn\u00ed dovolen\u00e9. \u201eV\u0161imli jsme si, \u017ee p\u0159i obl\u00e9k\u00e1n\u00ed na n\u011bkolik okam\u017eik\u016f lehce ustrnula. Kdy\u017e se k tomu za\u010daly pozd\u011bji p\u0159id\u00e1vat i lehk\u00e9 t\u0159esy, bylo n\u00e1m jasn\u00e9, \u017ee se n\u011bco d\u011bje. \u010c\u00edm d\u00e1l \u010dast\u011bji se objevovalo \u201ezkoprn\u011bn\u00ed\u201d prov\u00e1zen\u00e9 t\u0159esem, kter\u00e9 trvalo p\u0159ibli\u017en\u011b p\u016fl minuty. Potom se Kl\u00e1rka zase vr\u00e1tila do norm\u00e1lu a z t\u011bchto kr\u00e1tk\u00fdch epizod si nic nepamatovala,\u201c vzpom\u00edn\u00e1 Kl\u00e1r\u010din tat\u00ednek. V t\u00e9 dob\u011b proto rodi\u010de s dcerou nav\u0161t\u00edvili neurologa, kter\u00fd ale v po\u010d\u00e1tku po vy\u0161et\u0159en\u00ed nediagnostikoval \u017e\u00e1dn\u00e9 onemocn\u011bn\u00ed. P\u0159\u00edznaky se zhor\u0161ovaly a po n\u011bkolika m\u011bs\u00edc\u00edch se Kl\u00e1rka dostala do p\u00e9\u010de pr\u00e1v\u011b prof. Kr\u0161ka v Centru pro epilepsie Motol. Zde podstoupila \u0159adu dal\u0161\u00edch vy\u0161et\u0159en\u00ed. Po nich se poda\u0159ilo odhalit v mozku zdroj z\u00e1chvat\u016f a l\u00e9ka\u0159i navrhli, \u017ee budou Kl\u00e1rku operovat. Neurochirurgicky\u0301 v\u00fdkon podstoupila ve 4,5 letech a povedl se na v\u00fdbornou. Od t\u00e9 doby u\u017e toti\u017e nem\u011bla \u017e\u00e1dn\u00fd z\u00e1chvat a po 2 letech mohla dokonce vysadit v\u0161echny l\u00e9ky. \u201eKl\u00e1rku v ni\u010dem neomezujeme, sportuje, m\u00e1 spoustu kon\u00ed\u010dk\u016f a my ji pova\u017eujeme za vyl\u00e9\u010denou. Chod\u00edme u\u017e jen na ob\u010dasn\u00e9 kontroly, abychom se my i l\u00e9ka\u0159i ujistili, \u017ee je v\u0161e v po\u0159\u00e1dku,\u201c dopl\u0148uje Kl\u00e1r\u010din tat\u00ednek. \u201eKl\u00e1r\u010din p\u0159\u00edpad je d\u016fkazem toho, jak mocn\u00e1 um\u00ed medic\u00edna b\u00fdt, kdy\u017e dok\u00e1\u017eeme odhalit p\u0159\u00ed\u010dinu epilepsie,\u201c popisuje prof. Kr\u0161ek a dod\u00e1v\u00e1: \u201eNe v\u0161echny druhy epilepsie lze l\u00e9\u010dit operativn\u011b a n\u011bkte\u0159\u00ed pacienti se se z\u00e1chvaty pot\u00fdkaj\u00ed cely\u0301 \u017eivot. I u nich jsme ale ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f schopn\u00ed vhodnou l\u00e9\u010dbou dostat nemoc pod kontrolu a umo\u017enit jim tak \u017e\u00edt plnohodnotn\u00fd \u017eivot.\u201c<\/p>\n<p>Podle l\u00e9ka\u0159e je naprosto z\u00e1sadn\u00ed v\u00e9st s rodi\u010di nemocn\u00fdch d\u011bt\u00ed hlub\u0161\u00ed rozhovory. Teprve ty umo\u017en\u00ed nahl\u00e9dnout, jak onemocn\u011bn\u00ed d\u00edt\u011bte zasahuje do \u017eivota rodiny, co je z jejich pohledu nejv\u011bt\u0161\u00ed probl\u00e9m a co berou jako \u017eivotn\u00ed v\u00fdzvu. \u201eTento pohled se m\u016f\u017ee od po\u010d\u00e1te\u010dn\u00edho n\u00e1hledu l\u00e9ka\u0159e v\u00fdznamn\u011b li\u0161it. Je p\u0159itom samoz\u0159ejm\u00e9, \u017ee spr\u00e1vn\u00e9 pochopen\u00ed souvislost\u00ed z\u00e1sadn\u011b ovliv\u0148uje pl\u00e1nov\u00e1n\u00ed diagnostick\u00fdch a l\u00e9\u010debn\u00fdch postup\u016f,\u201c dopl\u0148uje prof. Kr\u0161ek.<\/p>\n<p>Chronickou epilepsii m\u00e1 v \u010cesk\u00e9 republice v aktivn\u00ed f\u00e1zi p\u0159ibli\u017en\u011b 80 000 lid\u00ed. Nejm\u00e9n\u011b dal\u0161\u00edch 160 000 osob se n\u011bkdy pro epilepsii v pr\u016fb\u011bhu \u017eivota l\u00e9\u010dilo nebo st\u00e1le l\u00e9\u010d\u00ed, ale jsou v\u00edce ne\u017e 5 let v remisi.<\/p>\n<p>Krom\u011b sout\u011b\u017ee \u201eL\u00edb\u00ed se ti, mami?\u201c organizuje spolek EpiStop dal\u0161\u00ed akce na podporu lid\u00ed s epilepsi\u00ed. Jednou z nich je EPPI vod\u00e1cky\u0301 triatlon, kter\u00fd prob\u011bhne letos 28. 9. ve Vesel\u00ed nad Lu\u017enic\u00ed. V\u00edce informac\u00ed k t\u00e9to akci je na port\u00e1le <a href=\"http:\/\/www.vodackytriatlon.cz\" rel=\"noopener\" target=\"_blank\">www.vodackytriatlon.cz<\/a>. D\u011bti s epilepsi\u00ed podporuje tak\u00e9 Spole\u010dnost E. Ta p\u0159ipravila bro\u017euru \u201eEpilepsie a d\u00edt\u011b\u201c a eduka\u010dn\u00ed bal\u00ed\u010dek pro pedagogy, jejich\u017e c\u00edlem je zv\u00fd\u0161it pov\u011bdom\u00ed o nemoci a odstranit nepravdiv\u00e9 m\u00fdty. Ten je voln\u011b ke sta\u017een\u00ed na <a href=\"http:\/\/www.spolecnoste.cz\" rel=\"noopener\" target=\"_blank\">www.spolecnoste.cz<\/a>.<\/p>\n<p>O EpiStop<\/p>\n<p>Zapsan\u00fd spolek EpiStop vytv\u00e1\u0159\u00ed platformu pro setk\u00e1v\u00e1n\u00ed, spolupr\u00e1ci a aktivn\u00ed \u010dinnost v\u0161ech skupin a osob, kter\u00e9 maj\u00ed vztah k lidem s epilepsi\u00ed, tedy pacient\u016f, z\u00e1stupc\u016f pacientsk\u00fdch organizac\u00ed, zdravotn\u00edk\u016f, odborn\u00fdch spole\u010dnost\u00ed, soci\u00e1ln\u00edch poradc\u016f, \u00fa\u0159edn\u00edk\u016f st\u00e1tn\u00ed spr\u00e1vy \u010di z\u00e1stupc\u016f m\u00e9di\u00ed. Jejich c\u00edlem je zlep\u0161it postaven\u00ed lid\u00ed s epilepsi\u00ed ve spole\u010dnosti. Na webu <a href=\"http:\/\/www.epistop.cz\" rel=\"noopener\" target=\"_blank\">www.epistop.cz<\/a> je \u0159ada voln\u011b dostupn\u00fdch eduka\u010dn\u00edch text\u016f, z\u00e1sady spr\u00e1vn\u00e9 prvn\u00ed pomoci a informace pro lidi s epilepsi\u00ed i jejich bl\u00edzk\u00e9.<\/p>\n<p>O epilepsii<\/p>\n<p>Epilepsie je neurologick\u00e9 onemocn\u011bn\u00ed charakterizovan\u00e9 opakovan\u00fdm v\u00fdskytem neprovokovan\u00fdch epileptick\u00fdch z\u00e1chvat\u016f. Pat\u0159\u00ed mezi nej\u010dast\u011bj\u0161\u00ed mozkov\u00e1 onemocn\u011bn\u00ed a u d\u011bt\u00ed je nej\u010dast\u011bj\u0161\u00ed chronickou chorobou mozku v\u016fbec. Ke stanoven\u00ed diagn\u00f3zy epilepsie zpravidla doch\u00e1z\u00ed p\u0159i v\u00fdskytu dvou a v\u00edce epileptick\u00fdch z\u00e1chvat\u016f, v\u00fdjime\u010dn\u011b ji\u017e po jednom takov\u00e9m z\u00e1chvatu. Typ\u016f epilepsie je nyn\u00ed ji\u017e ur\u010deno v\u00edce ne\u017e 40. Hlavn\u00edm projevem jsou epileptick\u00e9 z\u00e1chvaty, kter\u00e9 mohou m\u00edt r\u016fznou podobu. Mohou se projevovat nap\u0159. pouh\u00fdm zahled\u011bn\u00edm, brn\u011bn\u00edm, v\u00fdpadkem pam\u011bti nebo pak zn\u00e1m\u00fdmi k\u0159e\u010demi kon\u010detin se ztr\u00e1tou v\u011bdom\u00ed. Vyskytuj\u00ed se jak v pr\u016fb\u011bhu dne, tak v noci b\u011bhem sp\u00e1nku. P\u0159esto\u017ee se epilepsie m\u016f\u017ee objevit v kter\u00e9mkoliv v\u011bku, jsou \u017eivotn\u00ed obdob\u00ed, ve kter\u00fdch je novy\u0301 v\u00fdskyt epileptick\u00fdch z\u00e1chvat\u016f \u010dast\u011bj\u0161\u00ed ne\u017e v jin\u00fdch \u2013 hlavn\u00edmi vrcholy jsou prvn\u00ed rok \u017eivota a obdob\u00ed st\u00e1\u0159\u00ed. P\u0159\u00ed\u010diny vzniku nemoci se s \u010dasem m\u011bn\u00ed, d\u0159\u00edve mezi nimi dominoval komplikovan\u00fd porod \u010di infek\u010dn\u00ed onemocn\u011bn\u00ed, nyn\u00ed nab\u00fdvaj\u00ed na s\u00edle \u00farazy z adrenalinov\u00fdch sport\u016f \u010di nehod. Ve sv\u011bt\u011b trp\u00ed epilepsi\u00ed v\u00edce ne\u017e 50 mili\u00f3n\u016f lid\u00ed, v Evrop\u011b p\u0159es 6 mili\u00f3n\u016f lid\u00ed, z toho p\u0159ibli\u017en\u011b 2 mili\u00f3ny d\u011bt\u00ed.<\/p>\n<p>Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Startuje 6. ro\u010dn\u00edk sout\u011b\u017ee \u201eL\u00edb\u00ed se ti, mami?\u201c ur\u010deny\u0301 pro d\u011bti s epilepsi\u00ed a jejich rodi\u010de. Do 20. z\u00e1\u0159\u00ed mohou pos\u00edlat na adresu organizace EpiStop <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=30556\" title=\"D\u011bti s epilepsi\u00ed maluj\u00ed obrazy na v\u00fdstavu\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":30564,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-30556","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30556","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=30556"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30556\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/30564"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30556"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30556"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30556"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}