<\/p>\n\n\n\n
Praha, 27. 5. 2025 \u2013\u00a0Pacientsk\u00e1 organizace MYGRA-CZ. z.s. se 2. \u010dervna 2025 p\u0159ipoj\u00ed k\u00a0mezin\u00e1rodn\u00ed akci \u201elight the globe for MG\u201c a upozorn\u00ed na vz\u00e1cn\u00e9 onemocn\u011bn\u00ed myasthenia gravis (MG) modr\u00fdm nasv\u00edcen\u00edm Tan\u010d\u00edc\u00edho domu v\u00a0Praze. <\/strong><\/p>\n\n\n\n \u201eNasv\u00edcen\u00ed modrou barvou vn\u00edm\u00e1me jako nad\u011bji a jako poctu v\u0161em pacient\u016fm, jejich rodin\u00e1m, l\u00e9ka\u0159\u016fm, v\u00fdzkumn\u00fdm t\u00fdm\u016fm. Prost\u011b v\u0161em, kte\u0159\u00ed se nevzd\u00e1vaj\u00ed, pom\u00e1haj\u00ed a maj\u00ed z\u00e1jem zlep\u0161ovat a u\u010dit se \u017e\u00edt s\u00a0nebo vedle pacienta s\u00a0MG,\u201c \u0159\u00edk\u00e1 p\u0159edsedkyn\u011b MYGRA-CZ Helena Br\u016fhov\u00e1.<\/strong><\/p>\n\n\n\n \u201eU\u017e je to sice mnoho let zp\u00e1tky, ale st\u00e1le si dob\u0159e pamatuji manifestaci MG v m\u00e9m \u017eivot\u011b,\u201c vzpom\u00edn\u00e1 Helena Br\u016fhov\u00e1. \u201eByla jsem tehdy studentkou St\u0159edn\u00ed zdravotnick\u00e9 \u0161koly a rychle rozv\u00edjej\u00edc\u00ed se p\u0159\u00edznaky slabosti jsem ihned ch\u00e1pala jako po\u010d\u00e1tek n\u011bjak\u00e9 nemoci. Nejprve jsem nezvl\u00e1dla zdvihnout ruce p\u0159i \u010des\u00e1n\u00ed a \u010di\u0161t\u011bn\u00ed zub\u016f. N\u00e1sledn\u011b jsem nemohla zdvihnout nohu na obrubn\u00edk chodn\u00edku, nezvl\u00e1dala jsem nastoupit do vlaku a autobusu p\u0159i doj\u00ed\u017ed\u011bn\u00ed do \u0161koly. Nic m\u011b nebolelo, ale celkov\u00e1 \u00fanava byla velk\u00e1 a i p\u0159i mal\u00e9 n\u00e1maze se rychle zv\u011bt\u0161ovala.<\/p>\n\n\n\n M\u016fj praktick\u00fd l\u00e9ka\u0159 na m\u011b nikdy nic podstatn\u00e9ho nevid\u011bl a poradil mi, abych se m\u00e9n\u011b pozorovala, zapojila se do pr\u00e1ce \u010cesk\u00e9ho \u010derven\u00e9ho k\u0159\u00ed\u017ee ve m\u011bst\u011b a jela k mo\u0159i, kde se mi proh\u0159ej\u00ed klouby a svaly, t\u00edm se pr\u00fd v\u0161e vy\u0159e\u0161\u00ed. Jela jsem tedy k mo\u0159i. A\u010dkoliv jsem byla vynikaj\u00edc\u00ed plavec, p\u0159i druh\u00e9m vykoup\u00e1n\u00ed v mo\u0159i mi vlny podrazily nohy, unesl m\u011b proud a j\u00e1 nem\u011bla dost s\u00edly plavat. Jen d\u00edky pomoci pozorn\u00fdch plavc\u016f kolem jsem se \u00fapln\u011b vys\u00edlena dostala na b\u0159eh. <\/p>\n\n\n\n Po n\u00e1vratu dom\u016f se rozto\u010dil koloto\u010d vy\u0161et\u0159en\u00ed a pobyt\u016f v nemocnici. Trvalo to n\u011bkolik m\u011bs\u00edc\u016f a nakonec jsem le\u017eela na neurologick\u00e9m odd\u011blen\u00ed bez diagn\u00f3zy a mou jedinou medikac\u00ed byl ibuprofen. Tehdy m\u011b zachr\u00e1nila moje maminka, kter\u00e1 zajistila v p\u0159\u00edbuzenstvu \u201eprotek\u010dn\u00ed vy\u0161et\u0159en\u00ed\u201c v Thomayerov\u011b nemocnici. B\u011bhem hodiny mi ud\u011blali vy\u0161et\u0159en\u00ed EMG a dal\u0161\u00ed testy a spr\u00e1vn\u00e1 diagn\u00f3za byla na sv\u011bt\u011b. Dostala jsem l\u00e9k ke zlep\u0161en\u00ed svalov\u00e9 s\u00edly a kontrakci ze skupiny takzvan\u00fdch inhibitor\u016f cholinester\u00e1zy a jeho \u00fa\u010dinek byl pro mne ohromuj\u00edc\u00ed…<\/em>\u2026Mohla jsem op\u011bt norm\u00e1ln\u011b chodit. Tak za\u010dal m\u016fj \u017eivot s d\u00e1mou zvan\u00e1 myasthenia gravis,\u201c sv\u011b\u0159uje se se sv\u00fdm p\u0159\u00edb\u011bhem Helena Br\u016fhov\u00e1, kter\u00e1 zalo\u017eila a v sou\u010dasnosti vede ji\u017e 16 let pacientskou organizaci MYGRA-CZ, z.s.<\/p>\n\n\n\n Diagn\u00f3za myasthenia gravis \u2013 nemoc, kter\u00e1 nemus\u00ed b\u00fdt v\u017edy vid\u011bt<\/strong><\/p>\n\n\n\n Myasthenia gravis je vz\u00e1cn\u00e9 nervosvalov\u00e9, autoimunitn\u00ed onemocn\u011bn\u00ed, postihuj\u00edc\u00ed p\u0159\u00ed\u010dn\u011b pruhovan\u00e9 svalstvo. D\u016fvodem je porucha nervosvalov\u00e9ho p\u0159enosu. \u010cesky je tato choroba ozna\u010dov\u00e1na t\u011b\u017ek\u00e1 svalov\u00e1 slabost. I v\u00a021. stolet\u00ed je st\u00e1le nevyl\u00e9\u010diteln\u00e1. Dobr\u00e1 zpr\u00e1va pro nemocn\u00e9 MG je, \u017ee jde o l\u00e9\u010ditelnou chorobu a jej\u00ed p\u0159\u00edznaky se daj\u00ed zm\u00edrnit nebo mohou i vymizet.<\/p>\n\n\n\n P\u0159\u00edznaky MG<\/strong><\/p>\n\n\n\n Typick\u00fdm symptomem je svalov\u00e1 slabost r\u016fzn\u00e9 intenzity, postihuj\u00edc\u00ed r\u016fzn\u00e9 svalov\u00e9 skupiny. \u010cast\u00fdm prvn\u00edm p\u0159\u00edznakem je slabost o\u010d\u00ed, kter\u00e1 se manifestuje poklesem v\u00ed\u010dka nebo dvojit\u00fdm \u010di rozost\u0159en\u00fdm vid\u011bn\u00edm. K\u00a0v\u00fdrazn\u00e9mu zhor\u0161en\u00ed doch\u00e1z\u00ed po n\u00e1maze, nap\u0159. \u010dten\u00ed a p\u0159i osln\u011bn\u00ed v obchodn\u00edm dom\u011b nebo na slunci. Tento projev v\u00fdrazn\u011b omezuje pacienty v\u00a0pohybu, p\u0159i \u0159\u00edzen\u00ed motorov\u00e9ho vozidla, v\u00a0pr\u00e1ci i v\u00a0b\u011b\u017en\u00fdch denn\u00edch aktivit\u00e1ch.<\/p>\n\n\n\n Z\u00a0dal\u0161\u00edch p\u0159\u00edznak\u016f je nap\u0159\u00edklad slabost \u017ev\u00fdkac\u00edch a polykac\u00edch sval\u016f, slabost \u0161\u00edje, slabost horn\u00edch a doln\u00edch kon\u010detin. P\u0159i slabosti trupov\u00fdch sval\u016f je sn\u00ed\u017eena dechov\u00e1 kapacita, a to vede k\u00a0du\u0161nosti p\u0159i hovoru nebo i v\u00a0klidu.<\/p>\n\n\n\n Velmi v\u00e1\u017enou situac\u00ed je pro pacienty s\u00a0MG tzv. MYASTHENICK\u00c1 KRIZE.<\/strong> Jde o \u017eivot ohro\u017euj\u00edc\u00ed stav s\u00a0v\u00fdrazn\u00fdm oslaben\u00edm dechov\u00fdch sval\u016f, kter\u00e9 m\u016f\u017ee velmi rychle vy\u00fastit v z\u00e1stavu dechu. V\u00a0t\u011bchto p\u0159\u00edpadech je nutn\u00e1 rychl\u00e1 hospitalizace na JIP nebo ARO s\u00a0mo\u017enost\u00ed \u0159\u00edzen\u00e9ho d\u00fdch\u00e1n\u00ed plicn\u00edm ventil\u00e1torem.<\/p>\n\n\n\n Je velmi d\u016fle\u017eit\u00e9 v\u011bd\u011bt, \u017ee pr\u016fb\u011bh MG mohou zhor\u0161it i n\u011bkter\u00e9 l\u00e9ky. Seznam rizikov\u00fdch l\u00e9\u010div je ke sta\u017een\u00ed na www.mygra.cz<\/p>\n\n\n\n Kolik n\u00e1s je<\/strong><\/p>\n\n\n\n V\u00a0minulosti se uv\u00e1d\u011blo, \u017ee MG se vyskytuje p\u0159ev\u00e1\u017en\u011b u mlad\u00fdch \u017een 20\u201340 let a u\u00a0star\u0161\u00edch mu\u017e\u016f 50 a v\u00edce let. Faktem je, \u017ee se tato choroba m\u016f\u017ee manifestovat v\u00a0ka\u017ed\u00e9m v\u011bku. P\u0159esn\u00fd po\u010det pacient\u016f s\u00a0MG v\u00a0\u010cR n\u00e1m nen\u00ed zn\u00e1m, proto\u017ee nen\u00ed z\u0159\u00edzeno jedno centr\u00e1ln\u00ed pracovi\u0161t\u011b. Pacienti se l\u00e9\u010d\u00ed na r\u016fzn\u00fdch m\u00edstech, v\u011bt\u0161inu jsou to Neurologick\u00e9 kliniky p\u0159i velk\u00fdch fakultn\u00edch nemocnic\u00edch, nap\u0159\u00edklad VFN Praha, FN Brno, FN Ostrava atd. Odhadovan\u00fd po\u010det \u201emyastenik\u016f\u201c v\u00a0\u010cR se ud\u00e1v\u00e1 2\u00a0500\u20132\u00a0800, z\u00a0toho asi 2,5\u20135 procent d\u011btsk\u00fdch pacient\u016f.<\/p>\n\n\n\n Na \u010dase z\u00e1le\u017e\u00ed<\/strong><\/p>\n\n\n\n Pro ka\u017ed\u00fd v\u011bk a ka\u017ed\u00e9ho \u010dlov\u011bka s uveden\u00fdmi p\u0159\u00edznaky je velmi d\u016fle\u017eit\u00e1 v\u010dasn\u00e1, spr\u00e1vn\u00e1 diagnostika onemocn\u011bn\u00ed MG a n\u00e1sledn\u00e1 medikament\u00f3zn\u00ed l\u00e9\u010dba. Prvn\u00ed volbou l\u00e9kov\u00e9 terapie jsou l\u00e9ky zlep\u0161uj\u00edc\u00ed svalovou s\u00edlu a kontrakci, tzv. inhibitory cholinester\u00e1zy. D\u00e1le nastupuj\u00ed kortikoidy, imunosupresiva, intravenozn\u00ed l\u00e9\u010dba vysok\u00fdch d\u00e1vek lidsk\u00fdch imunoglobulin\u016f, modern\u00ed biologick\u00e1 l\u00e9\u010dba a inovativn\u00ed l\u00e9ky, v\u00fdm\u011bna plazmy a v n\u011bkter\u00fdch p\u0159\u00edpadech i chirurgick\u00e9 odstran\u011bn\u00ed brzl\u00edku.<\/p>\n\n\n\n Ka\u017ed\u00fd pacient s MG je origin\u00e1l, nemus\u00ed v\u017edy podstupovat v\u0161echny popsan\u00e9 mo\u017enosti l\u00e9\u010dby. N\u011bkdy doch\u00e1z\u00ed ke kompenzaci nemoci d\u0159\u00edve a n\u011bkdy pozd\u011bji. Je to v\u017edy i o trp\u011blivosti a odvaze onemocn\u011bn\u00ed \u010delit. V l\u00e9kov\u00e9 terapii do\u0161lo v posledn\u00edch letech k velk\u00e9mu posunu, co\u017e je v\u00fdbornou zpr\u00e1vou pro pacienty i l\u00e9ka\u0159e. Probl\u00e9mem je nyn\u00ed to, \u017ee ne v\u0161echny inovativn\u00ed l\u00e9ky maj\u00ed stanovenou \u00fahradu zdravotn\u00edmi poji\u0161\u0165ovnami, a tak je jich p\u0159edepisov\u00e1n\u00ed zdlouhav\u00e9 a z\u00e1visl\u00e9 na schv\u00e1len\u00ed p\u0159\u00edslu\u0161n\u00e9 ZP.<\/p>\n\n\n\n I touto problematikou se zab\u00fdv\u00e1 MYGRA-CZ, z. s. \u2013 spolek pacient\u016f s MG, l\u00e9ka\u0159\u016f, rodinn\u00fdch p\u0159\u00edslu\u0161n\u00edk\u016f, kter\u00fd h\u00e1j\u00ed z\u00e1jmy myastenik\u016f u\u017e \u0161estn\u00e1ct let, www.mygra.cz. C\u00edlem spolku je snaha o zlep\u0161en\u00ed \u017eivotn\u00edch podm\u00ednek pacient\u016f s MG, snaha o zlep\u0161en\u00ed informovanosti o nemoci mezi laickou i odbornou ve\u0159ejnost\u00ed a snaha o zlep\u0161en\u00ed l\u00e9\u010debn\u00e9 p\u00e9\u010de.<\/p>\n","protected":false},"excerpt":{"rendered":" Praha, 27. 5. 2025 \u2013\u00a0Pacientsk\u00e1 organizace MYGRA-CZ. z.s. se 2. \u010dervna 2025 p\u0159ipoj\u00ed k\u00a0mezin\u00e1rodn\u00ed akci \u201elight the globe for MG\u201c a upozorn\u00ed na vz\u00e1cn\u00e9 onemocn\u011bn\u00ed […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":48623,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-57740","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\/57740","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=57740"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/57740\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/48623"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=57740"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=57740"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=57740"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}