Praha, 21. 10. 2025 \u2013 Podle neurolog\u016f nemaj\u00ed des\u00edtky \u010cech\u016f s t\u011b\u017ekou formou epilepsie spr\u00e1vnou diagn\u00f3zu \u2013 ve skute\u010dnosti trp\u00ed Lennoxov\u00fdm-Gastautov\u00fdm syndromem (LGS). Z\u00e1va\u017en\u00e9 neurologick\u00e9 onemocn\u011bn\u00ed se projevuje opakovan\u00fdmi epileptick\u00fdmi z\u00e1chvaty, des\u00edtkami a\u017e stovkami denn\u011b, a prov\u00e1z\u00ed je kombinovan\u00e9 posti\u017een\u00ed. Na nemoc, kter\u00e1 se objevuje u\u017e u batolat, d\u0159\u00edve nezab\u00edrala \u017e\u00e1dn\u00e1 protiz\u00e1chvatov\u00e1 l\u00e9\u010dba.<\/p>\n\n\n\n
Dnes v\u0161ak l\u00e9ka\u0159i mohou nov\u00fdmi l\u00e9ky v\u00fdrazn\u011b omezit z\u00e1chvaty a zlep\u0161it kvalitu \u017eivota nejen pacient\u016f, ale i jejich rodin. Pacienti a jejich bl\u00edzc\u00ed v\u0161ak o mo\u017enostech l\u00e9\u010dby \u010dasto nev\u011bd\u00ed, proto\u017ee jsou ztraceni v syst\u00e9mu, nez\u0159\u00eddka v \u00fastavn\u00ed p\u00e9\u010di. Odborn\u00edci na tuto skute\u010dnost upozor\u0148uj\u00ed u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne LGS, kter\u00fd p\u0159ipad\u00e1 na 1. listopadu.
L\u00e9ka\u0159i p\u00e1traj\u00ed po dosp\u011bl\u00fdch pacientech s ment\u00e1ln\u00edm posti\u017een\u00edm a tzv. farmakorezistentn\u00ed epilepsi\u00ed, kter\u00e1 nereaguje na b\u011b\u017enou l\u00e9\u010dbu. Pro LGS jsou typick\u00e9 p\u0159edev\u0161\u00edm tzv. tonick\u00e9 no\u010dn\u00ed z\u00e1chvaty, kter\u00e9 se projevuj\u00ed nen\u00e1padn\u011b a mohou z\u016fstat bez pov\u0161imnut\u00ed.<\/p>\n\n\n\n
\u201eVe sp\u00e1nku dojde k nap\u011bt\u00ed kon\u010detin, kter\u00e9 se n\u00e1hle vymr\u0161t\u00ed dop\u0159edu. Z\u00e1chvat m\u016f\u017ee b\u00fdt doprov\u00e1zen v\u00fdk\u0159ikem nebo jin\u00fdm hlasov\u00fdm projevem a obvykle rychle odezn\u00ed. Pokud rodi\u010de, praktick\u00fd l\u00e9ka\u0159 nebo neurolog tento typ z\u00e1chvat\u016f u nemocn\u00e9ho zaznamen\u00e1, tak by m\u011bl po\u017e\u00e1dat n\u011bkter\u00e9 z center pro epilepsie o p\u0159e\u0161et\u0159en\u00ed, jestli se nejedn\u00e1 pr\u00e1v\u011b o LGS,\u201c \u0159\u00edk\u00e1 MUDr. Jana Z\u00e1rubov\u00e1 z Neurologick\u00e9 kliniky 2. LF UK a Centra pro epilepsie FN Motol.<\/p>\n\n\n\n
V \u010cesku trp\u00ed LGS stovky lid\u00ed, ve specializovan\u00fdch centrech pro l\u00e9\u010dbu epilepsie se jich ale l\u00e9\u010d\u00ed pouze des\u00edtky \u2013 zbytek je ztracen v syst\u00e9mu. Pacienti maj\u00ed t\u011b\u017ek\u00e1 kombinovan\u00e1 posti\u017een\u00ed, ment\u00e1ln\u00ed retardaci, poruchy chov\u00e1n\u00ed a epilepsii. \u201eDlouho panovalo p\u0159esv\u011bd\u010den\u00ed, \u017ee t\u011bmto pacient\u016fm ji\u017e nelze pomoci, a nebyla tedy ani snaha po nich p\u00e1trat. Problematick\u00fd byl tak\u00e9 p\u0159echod p\u00e9\u010de z d\u011btsk\u00e9 neurologie na dosp\u011blou. P\u0159esto\u017ee byli pacienti v d\u011btsk\u00e9m v\u011bku spr\u00e1vn\u011b diagnostikov\u00e1ni, tak se v dosp\u011blosti v syst\u00e9mu ztratili, proto\u017ee chyb\u011bla n\u00e1vaznost p\u00e9\u010de,\u201c \u0159\u00edk\u00e1 MUDr. Jana Amlerov\u00e1, Ph.D., z Neurologick\u00e9 kliniky 2. LF UK a Centra pro epilepsie FN Motol.<\/p>\n\n\n\n
Nyn\u00ed maj\u00ed neurologov\u00e9 nov\u011b k dispozici l\u00e9ky, kter\u00e9 dok\u00e1\u017e\u00ed pomoci i pacient\u016fm s LGS. Neum\u00ed vr\u00e1tit fungov\u00e1n\u00ed mozku do p\u016fvodn\u00edho stavu, ale z\u00e1sadn\u011b sni\u017euj\u00ed po\u010det epileptick\u00fdch z\u00e1chvat\u016f. U d\u011bt\u00ed jsou \u00fa\u010dinky v\u010dasn\u011b zah\u00e1jen\u00e9 l\u00e9\u010dby obvykle je\u0161t\u011b v\u00fdrazn\u011bj\u0161\u00ed.<\/p>\n\n\n\n
\u201eN\u011bkte\u0159\u00ed pacienti maj\u00ed i stovky z\u00e1chvat\u016f denn\u011b. Um\u00edme sn\u00ed\u017eit jejich po\u010det a nedoch\u00e1z\u00ed ji\u017e k \u017eivot ohro\u017euj\u00edc\u00edm atak\u00e1m. Sni\u017euje se i riziko poran\u011bn\u00ed a n\u00e1sledn\u00e9 hospitalizace. \u010casto tak\u00e9 dojde ke zm\u00edrn\u011bn\u00ed poruch chov\u00e1n\u00ed, a p\u00e9\u010de o pacienty je snaz\u0161\u00ed. Rodiny jsou z p\u00e9\u010de vy\u010derpan\u00e9 a je rozd\u00edl, kdy\u017e mus\u00ed \u0159e\u0161it deset z\u00e1chvat\u016f denn\u011b, nebo dva t\u00fddn\u011b,\u201c popisuje MUDr. Z\u00e1rubov\u00e1.<\/p>\n\n\n\n
LGS vznik\u00e1 v d\u011btstv\u00ed, nej\u010dast\u011bji mezi 1. a\u017e 10. rokem v\u011bku. P\u0159\u00ed\u010din onemocn\u011bn\u00ed m\u016f\u017ee b\u00fdt v\u00edce, od genetick\u00fdch a vrozen\u00fdch v\u00fdvojov\u00fdch vad mozku p\u0159es nezhoubn\u00e9 n\u00e1dory a\u017e po t\u011b\u017ek\u00e9 z\u00e1n\u011bty mozku, nap\u0159\u00edklad po prod\u011bl\u00e1n\u00ed meningitidy nebo encefalitidy. Nemoc klade velk\u00e9 n\u00e1roky na celou rodinu a bl\u00edzk\u00e9. P\u0159edev\u0161\u00edm dosp\u011bl\u00ed pacienti proto \u010dasto kon\u010d\u00ed v \u00fastavn\u00ed p\u00e9\u010di.<\/p>\n\n\n\n
\u201eP\u00e9\u010de o pacienty s LGS je extr\u00e9mn\u011b n\u00e1ro\u010dn\u00e1 a vy\u017eaduje nep\u0159etr\u017eit\u00fd dohled. V\u011bt\u0161ina rodi\u010d\u016f se o pacienty sna\u017e\u00ed pe\u010dovat doma co nejd\u00e9le, ale postupn\u011b jim doch\u00e1zej\u00ed s\u00edly a mnohdy u\u017e nen\u00ed jin\u00e9 \u0159e\u0161en\u00ed ne\u017e \u00fastavn\u00ed p\u00e9\u010de. Pacienti jsou intelektu\u00e1ln\u011b znev\u00fdhodn\u011bn\u00ed a trp\u00ed poruchami chov\u00e1n\u00ed, co\u017e jim znemo\u017e\u0148uje studovat nebo pracovat. Mnoz\u00ed jsou upout\u00e1ni na invalidn\u00ed voz\u00edk a pot\u0159ebuj\u00ed v\u00fdraznou dopomoc p\u0159i hygien\u011b,\u201c vysv\u011btluje MUDr. Z\u00e1rubov\u00e1.<\/p>\n\n\n\n
Rodiny maj\u00ed tak\u00e9 probl\u00e9m um\u00edstit sv\u00e9 bl\u00edzk\u00e9 do specializovan\u00e9ho pobytov\u00e9ho za\u0159\u00edzen\u00ed, proto\u017ee se instituce ob\u00e1vaj\u00ed \u010dast\u00fdch epileptick\u00fdch z\u00e1chvat\u016f. Odborn\u00edci ze spolku EpiStop se proto sna\u017e\u00ed dovzd\u011blat pracovn\u00edky p\u0159\u00edm\u00e9 p\u00e9\u010de, kte\u0159\u00ed o pacienty pe\u010duj\u00ed, aby v\u011bd\u011bli, jak spr\u00e1vn\u011b pou\u017e\u00edvat z\u00e1chrannou medikaci a poskytovat prvn\u00ed pomoc p\u0159i z\u00e1chvatu.<\/p>\n\n\n\n
EpiStop spolu s pacientsk\u00fdmi organizacemi Epicana a Spole\u010dnost E tak\u00e9 usiluj\u00ed o dostupnost pom\u016fcek, kter\u00e9 by p\u00e9\u010di o nemocn\u00e9 v dom\u00e1c\u00edm prost\u0159ed\u00ed usnadnily. \u201ePe\u010duj\u00edc\u00edm by velmi pomohla za\u0159\u00edzen\u00ed, kter\u00e1 umo\u017en\u00ed detekovat z\u00e1chvat nebo monitoruj\u00ed dechovou aktivitu \u2013 u t\u011bchto pacient\u016f je toti\u017e zv\u00fd\u0161en\u00e9 riziko n\u00e1hl\u00e9ho \u00famrt\u00ed. Nyn\u00ed je zdravotn\u00ed poji\u0161\u0165ovny nepropl\u00e1c\u00ed a rodiny na n\u011b mus\u00ed slo\u017eit\u011b sh\u00e1n\u011bt finance, nap\u0159\u00edklad pomoc\u00ed dobro\u010dinn\u00fdch sb\u00edrek,\u201c uzav\u00edr\u00e1 MUDr. Amlerov\u00e1.<\/p>\n","protected":false},"excerpt":{"rendered":"
Praha, 21. 10. 2025 \u2013 Podle neurolog\u016f nemaj\u00ed des\u00edtky \u010cech\u016f s t\u011b\u017ekou formou epilepsie spr\u00e1vnou diagn\u00f3zu \u2013 ve skute\u010dnosti trp\u00ed Lennoxov\u00fdm-Gastautov\u00fdm syndromem (LGS). Z\u00e1va\u017en\u00e9 neurologick\u00e9 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":56606,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-61514","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61514","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=61514"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61514\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/56606"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=61514"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=61514"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=61514"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}