{"id":20862,"date":"2015-05-02T08:57:18","date_gmt":"2015-05-02T06:57:18","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=20862"},"modified":"2015-05-02T08:57:18","modified_gmt":"2015-05-02T06:57:18","slug":"nekteri-epileptici-svoji-nemoc-radeji-taji","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=20862","title":{"rendered":"N\u011bkte\u0159\u00ed epileptici svoji nemoc rad\u011bji taj\u00ed"},"content":{"rendered":"

„Kdy\u017e se o\u0161et\u0159\u00ed deprese, pacientovi ubude epileptick\u00fdch z\u00e1chvat\u016f,“ \u0159\u00edk\u00e1 doktorka Jana Z\u00e1rubov\u00e1 z Centra pro epilepsii FN Motol Praha, p\u0159edsedkyn\u011b spolku EpiStop. <\/strong><\/p>\n

foto: MorgueFile<\/p>\n

– LN Co v\u00e1s inspirovalo k tomu, zalo\u017eit spolek lid\u00ed, kte\u0159\u00ed maj\u00ed vztah k pacient\u016fm s epilepsi\u00ed? <\/p>\n

P\u0159ed v\u00edce ne\u017e dvaceti lety za\u017eil pan profesor Kom\u00e1rek v Anglii n\u011bco, \u010demu Angli\u010dani \u0159\u00edkaj\u00ed „task force“. Jinak \u0159e\u010deno, setkal se s pracovn\u00ed skupinou lid\u00ed, kte\u0159\u00ed se zaj\u00edmali o probl\u00e9my lid\u00ed s epilepsi\u00ed. Pat\u0159ili k n\u00ed nejen pacienti, ale i l\u00e9ka\u0159i nebo novin\u00e1\u0159i. Po n\u00e1vratu dom\u016f pak podobnou skupinu zalo\u017eil i v \u010cesk\u00e9 republice a n\u00e1\u0161 spolek na jej\u00ed \u010dinnost nav\u00e1zal. <\/p>\n

– LN Jak\u00e9 v\u00fdhody m\u00e1 v\u00e1\u0161 spolek oproti klasick\u00fdm pacientsk\u00fdm organizac\u00edm? <\/p>\n

V pacientsk\u00e9 organizaci b\u00fdvaj\u00ed \u010dasto pacienti odd\u011bleni od zdravotn\u00edk\u016f. St\u00e1v\u00e1 se pak, \u017ee l\u00e9ka\u0159 vymysl\u00ed t\u0159eba n\u011bjak\u00fd projekt a \u0159e\u0161\u00ed v n\u011bm probl\u00e9my, kter\u00e9 pacienty s epilepsi\u00ed a\u017e tolik netr\u00e1p\u00ed. A na druh\u00e9 stran\u011b tak\u00e9 ryze pacientsk\u00e9 organizace n\u011bkdy d\u011blaj\u00ed v\u011bci, o nich\u017e si my l\u00e9ka\u0159i mysl\u00edme, \u017ee nejsou \u00fapln\u011b spr\u00e1vn\u00e9. Prost\u011b nem\u011bli bychom st\u00e1t proti sob\u011b, naopak pot\u0159ebujeme t\u00e1hnout za jeden provaz. Proto jsme se v na\u0161em spolku sna\u017eili d\u00e1t dohromady pacienty a l\u00e9ka\u0159e. <\/p>\n

– LN Do jak\u00e9 m\u00edry se v\u00e1m to povedlo? <\/p>\n

Mysl\u00edm, \u017ee jsme ud\u011blali obrovsk\u00fd kus pr\u00e1ce zejm\u00e9na na poli legislativn\u00edm, a d\u00edky tomu jsme zlep\u0161ili i kvalitu \u017eivota pacient\u016f s epilepsi\u00ed. Kdy\u017e jsme za\u010d\u00ednali, nesm\u011bli tito lid\u00e9 nap\u0159\u00edklad \u0159\u00eddit motorov\u00e1 vozidla ani jezdit do l\u00e1zn\u00ed, a na druh\u00e9 stran\u011b p\u0159itom nem\u011bli n\u00e1rok na invalidn\u00ed d\u016fchody. To v\u0161echno u\u017e je dnes na\u0161t\u011bst\u00ed minulost\u00ed. Povedlo se n\u00e1m dokonce i z\u00edskat pen\u00edze z Evropsk\u00fdch struktur\u00e1ln\u00edch fond\u016f, a d\u00edky tomu jsme mohli v uplynul\u00fdch dvou letech realizovat projekt zam\u011b\u0159en\u00fd na kontaktn\u00ed pomoc lidem s epilepsi\u00ed p\u0159i vstupu na trh pr\u00e1ce. <\/p>\n

– LN Poda\u0159ilo se v\u00e1m naj\u00edt pro tyto lidi uplatn\u011bn\u00ed v praxi? <\/p>\n

V \u0159ad\u011b p\u0159\u00edpad\u016f ano. Jedn\u00edm z nich byl nap\u0159\u00edklad pacient s pom\u011brn\u011b t\u011b\u017ekou formou epilepsie, kter\u00fd \u0159adu let nemohl naj\u00edt zam\u011bstn\u00e1n\u00ed. Zjistili jsme, \u017ee r\u00e1d amat\u00e9rsky fotografuje, a na\u0161li pro n\u011bj pr\u00e1ci ve fotolabu. V projektu byla zam\u011bstnan\u00e1 i soci\u00e1ln\u00ed pracovnice, kter\u00e1 zji\u0161\u0165ovala nejen vzd\u011bl\u00e1n\u00ed pacient\u016f, ale i co kdy zkou\u0161eli za profese a jak dlouho jsou nezam\u011bstnan\u00ed. Zaj\u00edmala se ov\u0161em tak\u00e9 o to, jak\u00fdm typem z\u00e1chvat\u016f trp\u00ed, a nab\u00edzela jim tr\u00e9ninkov\u00e1 m\u00edsta v kav\u00e1rn\u011b, kterou provozuje dobrovolnick\u00e9 centrum L\u00e9ko\u0159ice v Thomayerov\u011b nemocnici v Praze. Sou\u010d\u00e1st\u00ed t\u00fdmu byla i ergoterapeutka. Klienti si mohli natr\u00e9novat t\u0159eba vstupn\u00ed pohovor nane\u010disto s profesion\u00e1ln\u00edm personalistou. <\/p>\n

– LN Pokud pr\u00e1ci na\u0161li, nakolik jim to zm\u011bnilo \u017eivot? <\/p>\n

Pacient, kter\u00fd ne\u00fasp\u011b\u0161n\u011b hled\u00e1 pr\u00e1ci, po \u010dase snadno upad\u00e1 do deprese nebo ho tr\u00e1p\u00ed \u00fazkosti. Co\u017e pochopiteln\u011b jeho z\u00e1kladn\u00edmu onemocn\u011bn\u00ed v\u016fbec neprosp\u00edv\u00e1. Jestli\u017ee se mu ale poda\u0159\u00ed vystoupit ze za\u010darovan\u00e9ho kruhu psychologick\u00fdch nebo psychiatrick\u00fdch probl\u00e9m\u016f, m\u00e1 to velmi pozitivn\u00ed vliv na v\u00fdvoj jeho z\u00e1kladn\u00edho onemocn\u011bn\u00ed. Studie dokazuj\u00ed, \u017ee pokud se poda\u0159\u00ed zal\u00e9\u010dit deprese, pacientovi ubude z\u00e1chvat\u016f. <\/p>\n

– LN Jak moc m\u016f\u017ee epilepsie poznamenat \u017eivotn\u00ed styl? <\/p>\n

Z\u00e1le\u017e\u00ed na tom, jakou formou onemocn\u011bn\u00ed pacient trp\u00ed. N\u011bkte\u0159\u00ed se nemusej\u00ed moc hl\u00eddat a nic jim to ned\u011bl\u00e1. Zat\u00edmco jin\u00ed musej\u00ed pom\u011brn\u011b striktn\u011b dodr\u017eovat n\u011bkter\u00e1 pravidla. Jedno z nejd\u016fle\u017eit\u011bj\u0161\u00edch je u\u017e\u00edv\u00e1n\u00ed l\u00e9k\u016f, co\u017e n\u011bkdy b\u00fdv\u00e1 probl\u00e9m. Obzvl\u00e1\u0161\u0165 na za\u010d\u00e1tku nemoci, ale i u adolescent\u016f. Na\u0161t\u011bst\u00ed si nemoc pacienty v\u017edycky tro\u0161i\u010dku sama vychov\u00e1. <\/p>\n

– LN Hodn\u011b se hovo\u0159\u00ed o stigmatech, je\u017e tuto nemoc prov\u00e1zej\u00ed. Kter\u00e1 pat\u0159\u00ed k nej\u010dast\u011bj\u0161\u00edm? <\/p>\n

K\u0159es\u0165an\u00e9 ozna\u010dovali epilepsii za posedlost \u010f\u00e1blem u\u017e p\u0159ed 2000 lety. Mo\u017en\u00e1 od t\u00e9 doby je v na\u0161ich mysl\u00edch negativn\u011b zapsan\u00e1. Pokud je nav\u00edc laik vystaven velk\u00e9mu epileptick\u00e9mu z\u00e1chvatu, obvykle ho to velmi vyd\u011bs\u00ed a u\u017e nikdy nechce nic podobn\u00e9ho za\u017e\u00edt. Zam\u011bstnavatel\u00e9 se \u010dasto ob\u00e1vaj\u00ed probl\u00e9m\u016f, a tak rad\u011bji \u010dlov\u011bka s epilepsi\u00ed odm\u00edtnou, ani\u017e se zaj\u00edmaj\u00ed o to, jak z\u00e1va\u017en\u00e1 jeho nemoc opravdu je. Na druh\u00e9 stran\u011b zn\u00e1m tak\u00e9 \u0159adu pacient\u016f, kte\u0159\u00ed vedou prima \u017eivot, jak\u00fd by jim mohli z\u00e1vid\u011bt i zdrav\u00ed lid\u00e9, ale kdy\u017e jim \u0159eknu, zda by \u0161li sv\u016fj p\u0159\u00edb\u011bh vypr\u00e1v\u011bt t\u0159eba do televize, odm\u00edtnou. Svoji nemoc taj\u00ed p\u0159ed sv\u00fdmi sousedy i v zam\u011bstn\u00e1n\u00ed. <\/p>\n

– LN Co je podle v\u00e1s dnes nejv\u011bt\u0161\u00ed probl\u00e9m \u010desk\u00fdch epileptik\u016f? <\/p>\n

V p\u00e9\u010di o tyto pacienty by m\u011bly jednotliv\u00e9 st\u00e1tn\u00ed slo\u017eky navz\u00e1jem spolupracovat, ale bohu\u017eel tomu tak nen\u00ed. M\u016f\u017eeme m\u00edt supermodern\u00ed l\u00e9ky, ale kdy\u017e pacienta spole\u010dnost nep\u0159ijme, nebude m\u00edt p\u0159\u00e1tele ani pr\u00e1ci, pak kvalita jeho \u017eivota nikdy nebude dobr\u00e1. Proto je t\u0159eba dos\u00e1hnout u\u017e\u0161\u00ed spolupr\u00e1ce nejen mezi st\u00e1tn\u00ed, zdravotn\u00ed a soci\u00e1ln\u00ed p\u00e9\u010d\u00ed, ale i neziskov\u00fdm sektorem, v\u011bdou a v\u00fdzkumem. <\/p>\n

– LN Mysl\u00edte, \u017ee by pomohlo, kdyby se o epilepsii n\u011bco dozv\u011bd\u011bly u\u017e d\u011bti na z\u00e1kladn\u00edch \u0161kol\u00e1ch? <\/p>\n

Ur\u010dit\u011b. Chceme se pokusit o to, aby se do osnov zdravotn\u00ed v\u00fdchovy dostaly i z\u00e1klady prvn\u00ed pomoci p\u0159i velk\u00e9m epileptick\u00e9m z\u00e1chvatu. Chceme o tom jednat s Ministerstvem \u0161kolstv\u00ed, ml\u00e1de\u017ee a t\u011blov\u00fdchovy \u010cR. <\/p>\n

– LN Jste l\u00e9ka\u0159ka a z\u00e1rove\u0148 p\u0159edsedkyn\u011b spolku EpiStop \u2013 jak se navz\u00e1jem tyto dv\u011b funkce dopl\u0148uj\u00ed? <\/p>\n

Pokud se sna\u017e\u00edm jako l\u00e9ka\u0159ka prosadit n\u011bco p\u0159es st\u00e1tn\u00ed instituce, v\u00edm, \u017ee to obvykle velmi dlouho trv\u00e1. Prosadit t\u0159eba zm\u011bnu legislativy t\u00fdkaj\u00edc\u00ed se \u0159idi\u010dsk\u00fdch pr\u016fkaz\u016f pro lidi s epilepsi\u00ed n\u00e1s st\u00e1lo sedm let nal\u00e9h\u00e1n\u00ed a vysv\u011btlov\u00e1n\u00ed. Jako z\u00e1stupkyn\u011b neziskov\u00e9 organizace mohu b\u00fdt do ur\u010dit\u00e9 m\u00edry svobodn\u011bj\u0161\u00ed a pru\u017en\u011bj\u0161\u00ed. Pom\u011brn\u011b rychle jsme nap\u0159\u00edklad prosadili projekt n\u00e1ramk\u016f opat\u0159en\u00fdch USB, na nich\u017e maj\u00ed pacienti nahranou souhrnnou zpr\u00e1vu o sv\u00e9m zdravotn\u00edm stavu, anebo modul pro lidi s epilepsi\u00ed do aplikace Den\u00edk pacienta pro tablety a chytr\u00e9 telefony, kam si mohou zaznamen\u00e1vat jednotliv\u00e9 z\u00e1chvaty i jejich spou\u0161t\u011b\u010de. Prost\u0159ednictv\u00edm EpiStopu m\u016f\u017eeme tak\u00e9 rychleji p\u0159ed\u00e1vat pacient\u016fm nov\u00e9 informace a pohotov\u011bji reagovat na jejich po\u017eadavky a podn\u011bty.<\/p>\n

IVANA MATY\u00c1\u0160OV\u00c1
\nLidov\u00e9 noviny<\/p>\n","protected":false},"excerpt":{"rendered":"

„Kdy\u017e se o\u0161et\u0159\u00ed deprese, pacientovi ubude epileptick\u00fdch z\u00e1chvat\u016f,“ \u0159\u00edk\u00e1 doktorka Jana Z\u00e1rubov\u00e1 z Centra pro epilepsii FN Motol Praha, p\u0159edsedkyn\u011b spolku EpiStop.<\/p>\n<\/div>","protected":false},"author":1,"featured_media":21147,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-20862","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\/20862","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=20862"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/20862\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21147"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=20862"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=20862"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=20862"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}