Praha, 22. 3. 2021 \u2013 N\u011bkte\u0159\u00ed lid\u00e9 s onemocn\u011bn\u00edm epilepsi\u00ed bojuj\u00ed s izolac\u00ed a samotou \u2013 upozor\u0148uje na to mezin\u00e1rodn\u00ed akce tzv. Purpleday, kter\u00e1 ka\u017edoro\u010dn\u011b p\u0159ipad\u00e1 na 26. b\u0159ezna. Ka\u017ed\u00fd, kdo chce pacienty s epilepsi\u00ed podpo\u0159it, si proto v tento den zvol\u00ed oble\u010den\u00ed ve fialov\u00e9 barv\u011b. Leto\u0161n\u00ed akce zd\u016fraz\u0148uje tak\u00e9 to, \u017ee i v dne\u0161n\u00ed dob\u011b mus\u00ed pacienti s epilepsi\u00ed \u010delit \u0159ad\u011b m\u00fdt\u016f \u2013 nap\u0159\u00edklad, \u017ee by nem\u011bli sportovat. Pravideln\u00fd pohyb p\u0159itom sni\u017euje po\u010det epileptick\u00fdch z\u00e1chvat\u016f a zlep\u0161uje celkov\u00fd psychick\u00fd a fyzick\u00fd stav. K bour\u00e1n\u00ed m\u00fdt\u016f se p\u0159ipojila tradi\u010dn\u00ed v\u00fdtvarn\u00e1 sout\u011b\u017e pro mal\u00e9 pacienty s epilepsi\u00ed \u201eL\u00edb\u00ed se ti, mami?\u201c, kter\u00e1 stanovila sport jako hlavn\u00ed t\u00e9ma leto\u0161n\u00edho ro\u010dn\u00edku.<\/p>\n\n\n\n
Pohyb je ned\u00edlnou sou\u010d\u00e1st\u00ed \u017eivota dvacetilet\u00e9ho Honzy, kter\u00e9mu l\u00e9ka\u0159i epilepsii zjistili v necel\u00fdch dvou letech. D\u00edky operaci mozku je ji\u017e v\u00edce ne\u017e rok bez z\u00e1chvat\u016f a m\u016f\u017ee se sportov\u00e1n\u00ed v\u011bnovat naplno. <\/p>\n\n\n\n
\u201eNemus\u00edm se tolik hl\u00eddat a m\u016f\u017eu si d\u00e1t v\u00edce do t\u011bla. V\u011bnuji se triatlonu, co\u017e te\u010f trochu komplikuj\u00ed vl\u00e1dn\u00ed na\u0159\u00edzen\u00ed, tak\u017ee mus\u00edm improvizovat. Kolo jsem vym\u011bnil za rotoped a jezd\u00edm doma. B\u011b\u017eeckou trasu mus\u00edm omezit jen na okres, ve kter\u00e9m bydl\u00edm, a plav\u00e1n\u00ed zat\u00edm nem\u016f\u017eu d\u011blat v\u016fbec, proto\u017ee jsou baz\u00e9ny zav\u0159en\u00e9,\u201c \u0159\u00edk\u00e1 Honza, kter\u00fd je pravideln\u00fdm \u00fa\u010dastn\u00edkem EPPI vod\u00e1ck\u00e9ho triatlonu \u2013 speci\u00e1ln\u00edho z\u00e1vodu, do n\u011bj\u017e se zapojuj\u00ed jak lid\u00e9 s epilepsi\u00ed, tak zdrav\u00ed sportovci.<\/p>\n\n\n\n
Honza studuje ekonomiku a managment a ve voln\u00fdch chv\u00edl\u00edch pracuje jako pomocn\u00fd zdravotn\u00edk v nemocnici. <\/p>\n\n\n\n
Sportov\u00e1n\u00ed je tak\u00e9 leto\u0161n\u00edm t\u00e9matem v\u00fdtvarn\u00e9 sout\u011b\u017ee \u201eL\u00edb\u00ed se ti, mami?\u201c. Jej\u00ed organiz\u00e1to\u0159i se ji\u017e dev\u00e1t\u00fdm rokem sna\u017e\u00ed motivovat d\u011bti s epilepsi\u00ed, aby sv\u00fdmi v\u00fdtvory uk\u00e1zaly, \u017ee jsou stejn\u011b \u0161ikovn\u00e9 jako jejich zdrav\u00ed vrstevn\u00edci. <\/p>\n\n\n\n
\u201eMottem sout\u011b\u017ee je letos \u201aSport aneb epilepsie n\u00e1s nedob\u011bhne\u2018 a d\u011bti maj\u00ed za \u00fakol ztv\u00e1rnit jak\u00fdkoli pohyb, kter\u00fd jim d\u011bl\u00e1 radost. A\u0165 u\u017e jde o m\u00ed\u010dov\u00e9 hry, j\u00edzdu na kole nebo t\u0159eba sk\u00e1k\u00e1n\u00ed p\u0159es \u0161vihadlo. Nakreslit mohou p\u0159i sportu sami sebe, kamar\u00e1dy nebo celou rodinu. Fantazii se meze nekladou. Chceme d\u011bti podpo\u0159it v pohybu, kter\u00e9ho v koronavirov\u00e9 pandemii \u010dasto nemaj\u00ed dostatek,\u201c \u0159\u00edk\u00e1 za organiz\u00e1tory Monika B\u00e1rtov\u00e1 ze spole\u010dnosti UCB, kter\u00e1 sout\u011b\u017e pod z\u00e1\u0161titou spolku EpiStop po\u0159\u00e1d\u00e1. <\/p>\n\n\n\n
Sport znamen\u00e1 zvl\u00e1\u0161t\u011b pro d\u011bti psychickou vzpruhu, nemluv\u011b o tom, \u017ee pom\u00e1h\u00e1 zlep\u0161ovat jejich celkovou kondici. L\u00e9ka\u0159i doporu\u010duj\u00ed d\u011btem s epilepsi\u00ed v\u0161echny sporty krom\u011b pohybu ve v\u00fd\u0161k\u00e1ch, jako je horolezectv\u00ed nebo para\u0161utismus. Dal\u0161\u00ed aktivity, jako je plav\u00e1n\u00ed nebo cyklistika, je podle nich vhodn\u00e9 d\u011blat v\u017edy s doprovodem. \u201eSportov\u00e1n\u00ed ve skupin\u011b sice nen\u00ed kv\u016fli pandemii povolen\u00e9, ale my v\u017edy doporu\u010dujeme b\u00fdt alespo\u0148 ve dvojici. Ka\u017ed\u00fd by m\u011bl promyslet svou zdravotn\u00ed situaci a podle toho sport zvolit. P\u0159\u00edpadn\u011b se m\u016f\u017ee poradit se sv\u00fdm l\u00e9ka\u0159em. M\u00e1me pacienty, kte\u0159\u00ed jsou roky bez z\u00e1chvat\u016f, a nejsou tak nemoc\u00ed t\u00e9m\u011b\u0159 limitov\u00e1ni. Lidem, u kter\u00fdch se n\u00e1m zat\u00edm nepoda\u0159ilo dostat z\u00e1chvaty zcela pod kontrolu, doporu\u010dujeme alespo\u0148 dom\u00e1c\u00ed cvi\u010den\u00ed v podob\u011b j\u00f3gy nebo kondi\u010dn\u00edch tr\u00e9nink\u016f,\u201c vysv\u011btluje MUDr. Jana Z\u00e1rubov\u00e1 z Centra pro epilepsii FN Motol, kter\u00e1 je z\u00e1rove\u0148 m\u00edstop\u0159edsedkyn\u00ed spolku EpiStop. Nejp\u0159irozen\u011bj\u0161\u00edm pohybem je podle n\u00ed ch\u016fze a n\u011bkte\u0159\u00ed pacienti chod\u00ed na pravideln\u00e9 proch\u00e1zky se sv\u00fdmi asisten\u010dn\u00edmi psy, kte\u0159\u00ed na n\u011b dohl\u00ed\u017e\u00ed. <\/p>\n\n\n\n
Koronavirus se nedotkl jenom sportu, ale tak\u00e9 u\u010den\u00ed. Podle vedouc\u00edho l\u00e9ka\u0159e Centra pro epilepsie FN Motol prof. MUDr. Pavla Kr\u0161ka, Ph.D., se koronavirov\u00e1 pandemie a s n\u00ed spojen\u00e1 distan\u010dn\u00ed v\u00fduka podepisuje na n\u00e1lad\u011b a aktivit\u011b jeho pacient\u016f. \u201eOd lo\u0148sk\u00e9ho jara si d\u011bl\u00e1m pr\u016fzkum a zpo\u010d\u00e1tku byla polovina d\u011bt\u00ed r\u00e1da, \u017ee m\u016f\u017ee b\u00fdt doma, a druh\u00e1 p\u016flka cht\u011bla do \u0161koly. Letos u\u017e chce do \u0161koly v\u011bt\u0161ina. D\u011bti s epilepsi\u00ed maj\u00ed v\u011bt\u0161\u00ed riziko rozvoje psychologick\u00fdch, a dokonce i psychiatrick\u00fdch poruch. Rodi\u010de by proto ur\u010dit\u011b nem\u011bli podce\u0148ovat du\u0161evn\u00ed zdrav\u00ed sv\u00fdch potomk\u016f. Je d\u016fle\u017eit\u00e9, aby d\u011bti m\u011bly pravideln\u00fd re\u017eim, pohyb na \u010derstv\u00e9m vzduchu a alespo\u0148 n\u011bjak\u00fd kontakt s vrstevn\u00edky. Samoz\u0159ejm\u011b za dodr\u017een\u00ed protiepidemick\u00fdch opat\u0159en\u00ed,\u201c \u0159\u00edk\u00e1 prof. Kr\u0161ek. <\/p>\n\n\n\n
O\nv\u00fdtvarn\u00e9 sout\u011b\u017ei \u201eL\u00edb\u00ed se ti, mami?\u201c<\/strong><\/p>\n\n\n\n V\u00fdtvarn\u00e1 sout\u011b\u017e pro d\u011bti s epilepsi\u00ed,\nkterou vyhla\u0161uje spole\u010dnost UCB ve spolupr\u00e1ci se spolkem EpiStop, startuje 26.\nb\u0159ezna u p\u0159\u00edle\u017eitosti PurpleDay. Mottem leto\u0161n\u00edho ji\u017e dev\u00e1t\u00e9ho ro\u010dn\u00edku je \u201eSport\naneb epilepsie n\u00e1s nedob\u011bhne\u201c. A\u017e do 30. z\u00e1\u0159\u00ed mohou d\u011bti s epilepsi\u00ed pos\u00edlat\nsv\u00e9 v\u00fdtvory zobrazuj\u00edc\u00ed jejich obl\u00edbenou sportovn\u00ed aktivitu na adresu spolku\nEpiStop. Vyhr\u00e1t mohou v\u00fdtvarn\u00e9 sady pro dal\u0161\u00ed tvo\u0159en\u00ed. V\u00edce o sout\u011b\u017ei najdou\nz\u00e1jemci na www.libisetimami.cz<\/a>.<\/p>\n\n\n\n O\nepilepsii<\/strong><\/p>\n\n\n\n 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. 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. Epilepsie nen\u00ed jedna nemoc, jedn\u00e1 se sp\u00ed\u0161e o skupinu onemocn\u011bn\u00ed. 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 kon\u010detin, v\u00fdpadkem pam\u011bti nebo 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. U p\u0159ev\u00e1\u017en\u00e9 v\u011bt\u0161iny epilepsi\u00ed nen\u00ed p\u0159\u00ed\u010dina doposud zn\u00e1ma. Epilepsii m\u00e1 v \u010cesk\u00e9 republice p\u0159ibli\u017en\u011b 80 000 lid\u00ed. V sou\u010dasn\u00e9 dob\u011b l\u00e9ka\u0159i p\u0159i spr\u00e1vn\u00e9 a v\u010dasn\u00e9 diagnostice a farmakologick\u00e9 l\u00e9\u010db\u011b dostanou nemoc pod kontrolu a\u017e u 70 % pacient\u016f. Celosv\u011btov\u011b m\u00e1 epilepsi\u00ed v\u00edce ne\u017e 50 milion\u016f lid\u00ed, v Evrop\u011b p\u0159es 6 milion\u016f lid\u00ed, z toho p\u0159ibli\u017en\u011b 2 miliony d\u011bt\u00ed.<\/p>\n\n\n\n Tiskov\u00e1 zpr\u00e1va<\/p>\n\n\n\n ———————–<\/p>\n\n\n\n P\u0158\u00cdB\u011aH NATHALY:<\/p>\n\n\n\n Kv\u016fli epilepsii upadala do\nbezv\u011bdom\u00ed <\/strong><\/p>\n\n\n\n U dnes dvan\u00e1ctilet\u00e9 Nathaly z Olomoucka se epilepsie poprv\u00e9 objevila ve \u0161kolce. P\u0159i odpoledn\u00edm sp\u00e1nku upadla do bezv\u011bdom\u00ed a zdravotn\u00edci ji p\u0159evezli do nemocnice, kde podstoupila \u0159adu vy\u0161et\u0159en\u00ed. L\u00e9ka\u0159i u Nathaly odhalili tzv. idiopatickou epilepsii, kter\u00e1 v jej\u00edm p\u0159\u00edpad\u011b nen\u00ed d\u011bdi\u010dn\u00e1 a p\u0159esn\u00e1 p\u0159\u00ed\u010dina je dosud nezn\u00e1m\u00e1. <\/p>\n\n\n\n \u201ePomoc\u00ed CT zjistili, \u017ee m\u00e1 tekutinu na mozku, kter\u00e1 tla\u010d\u00ed na sp\u00e1nkov\u00fd lalok. Nikdo v m\u00e9 rodin\u011b ani u b\u00fdval\u00e9ho man\u017eela epilepsi\u00ed netrp\u011bl. Podobn\u00e9 p\u0159\u00edznaky se p\u016fl roku zp\u011btn\u011b za\u010daly projevovat tak\u00e9 u o p\u011bt let star\u0161\u00edho syna (mimo ztr\u00e1ty v\u011bdom\u00ed), a tak jsem se b\u00e1la. Postupn\u011b jsem si v\u0161imla, \u017ee m\u00e1 Nathaly z\u00e1chvat v\u017edy po velk\u00e9m stresov\u00e9m vyp\u011bt\u00ed,\u201c popisuje po\u010d\u00e1tky s dce\u0159inou nemoc\u00ed jej\u00ed maminka \u0160\u00e1rka. <\/p>\n\n\n\n Nathaly m\u011bla z\u00e1chvaty pouze ve sp\u00e1nku, kdy j\u00ed ztuhla lev\u00e1 polovina t\u011bla a upadala do bezv\u011bdom\u00ed. Po nabyt\u00ed v\u011bdom\u00ed trvalo dlouho, ne\u017e promluvila, proto\u017ee nemohla. <\/p>\n\n\n\n \u201eD\u011bti jsem vychov\u00e1vala sama a bylo to n\u00e1ro\u010dn\u00e9 obdob\u00ed. Ka\u017ed\u00fd m\u011bs\u00edc jsem byla s jedn\u00edm nebo druh\u00fdm v nemocnici. M\u011bli jsme fenku staford\u0161irsk\u00e9ho teri\u00e9ra, kter\u00e1 se od Nathaly nehnula ani na krok. Sp\u00e1vala s n\u00e1mi u postele a n\u011bkolikr\u00e1t m\u011b \u0161t\u011bkotem upozornila na z\u00e1chvat mal\u00e9,\u201c \u0159\u00edk\u00e1 \u0160\u00e1rka. <\/p>\n\n\n\n L\u00e9\u010dba na\u0161t\u011bst\u00ed za\u010dala \u00fa\u010dinkovat a intervaly mezi jednotliv\u00fdmi z\u00e1chvaty se postupn\u011b prodlu\u017eovaly. Krom\u011b l\u00e9k\u016f Nathaly pomohl i pravideln\u00fd re\u017eim, kter\u00fd musela striktn\u011b dodr\u017eovat. \u201eChodila sp\u00e1t p\u0159esn\u011b v p\u016fl osm\u00e9, hodinu p\u0159ed sp\u00e1nkem nesm\u011bla koukat do tabletu apod. Re\u017eim musela dodr\u017eovat i na \u0161koln\u00edch akc\u00edch (\u0161koly v p\u0159\u00edrod\u011b). Mysl\u00edm si, \u017ee to m\u011blo na zlep\u0161en\u00ed jej\u00ed nemoci velk\u00fd vliv,\u201c vysv\u011btluje jej\u00ed maminka. <\/p>\n\n\n\n Nyn\u00ed je Nathaly ji\u017e \u010dty\u0159i roky bez z\u00e1chvat\u016f, pravideln\u011b doch\u00e1z\u00ed na EEG a kontroly, a dokonce j\u00ed v prosinci 2020 l\u00e9ka\u0159i vysadili i l\u00e9ky. <\/p>\n\n\n\n L\u00e9\u010dbu museli odborn\u00edci n\u011bkolikr\u00e1t m\u011bnit, proto\u017ee ji l\u00e9ky hodn\u011b usp\u00e1valy. \u201eByla pomalej\u0161\u00ed ne\u017e jej\u00ed vrstevn\u00edci. \u010casto us\u00ednala ve \u0161kole, p\u0159itom spala 11 hodin. Nathaly je jedni\u010dk\u00e1\u0159ka a dob\u0159e se u\u010d\u00ed, ale nap\u0159\u00edklad nedok\u00e1zala napsat dikt\u00e1t stejn\u011b rychle jako jej\u00ed spolu\u017e\u00e1ci. Bohu\u017eel se ve \u0161kole setkala i se \u0161ikanou. P\u0159edn\u00e1\u0161ky a osv\u011bta o epilepsii v na\u0161\u00ed \u0161kole ale na\u0161t\u011bst\u00ed situaci zlep\u0161ily, m\u011bla nejlep\u0161\u00ed pan\u00ed u\u010ditelku t\u0159\u00eddn\u00ed (Mgr. Monika Glancov\u00e1), kter\u00e1 n\u00e1m v\u017edy vy\u0161la vst\u0159\u00edc, pochopila n\u00e1s a pomohla n\u00e1m,\u201c vysv\u011btluje \u0160\u00e1rka. <\/p>\n\n\n\n Nathaly se nyn\u00ed m\u016f\u017ee v\u011bnovat v\u0161em sv\u00fdm kon\u00ed\u010dk\u016fm naplno, bav\u00ed ji \u010dten\u00ed, plav\u00e1n\u00ed a r\u00e1da jezd\u00ed na \u010dundry s t\u00e1tou. Miluje Harryho Pottera a celou jeho s\u00e9rii p\u0159e\u010detla jak v origin\u00e1ln\u00edm anglick\u00e9m jazyce, tak i v \u010de\u0161tin\u011b. P\u00ed\u0161e i svou vlastn\u00ed knihu. Dal\u0161\u00ed velkou v\u00e1\u0161n\u00ed Nathaly je malov\u00e1n\u00ed. Vloni dokonce zv\u00edt\u011bzila ve v\u00fdtvarn\u00e9 sout\u011b\u017ei \u201eL\u00edb\u00ed se ti, mami?\u201c, kterou spolupo\u0159\u00e1d\u00e1 spolek EpiStop a spole\u010dnost UCB. Na v\u00edt\u011bzn\u00e9m obr\u00e1zku ztv\u00e1rnila sv\u016fj sen st\u00e1t se mal\u00ed\u0159kou. \u201eK V\u00e1noc\u016fm dostala mal\u00ed\u0159sk\u00fd stojan a p\u0159\u00e1la by si v dom\u011b m\u00edt sv\u016fj mal\u00fd ateli\u00e9r, na kter\u00fd te\u010f \u0161et\u0159\u00edme,\u201c uzav\u00edr\u00e1 p\u0159\u00edb\u011bh s dobr\u00fdm koncem \u0160\u00e1rka. Praha, 22. 3. 2021 \u2013 N\u011bkte\u0159\u00ed lid\u00e9 s onemocn\u011bn\u00edm epilepsi\u00ed bojuj\u00ed s izolac\u00ed a samotou \u2013 upozor\u0148uje na to mezin\u00e1rodn\u00ed akce tzv. Purpleday, kter\u00e1 ka\u017edoro\u010dn\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1875,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36016","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\/36016","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=36016"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36016\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/1875"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36016"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36016"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36016"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
<\/p>\n","protected":false},"excerpt":{"rendered":"