{"id":41770,"date":"2023-08-30T09:27:44","date_gmt":"2023-08-30T07:27:44","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=41770"},"modified":"2023-08-30T09:27:45","modified_gmt":"2023-08-30T07:27:45","slug":"nemoc-lidem-bere-schopnost-dychat-mluvit-polykat","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=41770","title":{"rendered":"Nemoc lidem bere schopnost d\u00fdchat, mluvit, polykat"},"content":{"rendered":"\n

K\u00a0moden\u00ed l\u00e9\u010db\u011b se dostane jen zlomek pacient\u016f<\/em><\/p>\n\n\n\n

Dvojit\u00e9 vid\u011bn\u00ed, neschopnost h\u00fdbat se, mluvit, polykat, nebo dokonce d\u00fdchat \u2013 to v\u0161e pat\u0159\u00ed mezi projevy vz\u00e1cn\u00e9ho autoimunitn\u00edho onemocn\u011bn\u00ed myastenie gravis (MG), kter\u00fdm v\u00a0\u010cesku trp\u00ed 2 500 a\u017e 3 000 osob. T\u011blo p\u0159i n\u011bm samo vytv\u00e1\u0159\u00ed protil\u00e1tky, kter\u00e9 br\u00e1n\u00ed p\u0159enosu impuls\u016f z\u00a0nerv\u016f do svalu. Lid\u00e9, kte\u0159\u00ed poruchou nervov\u00e9ho syst\u00e9mu trp\u00ed, jsou zesl\u00e1bl\u00ed a nemohou svaly ovl\u00e1dat, p\u0159ibli\u017en\u011b 10\u201315 % z\u00a0nich nemoc ohro\u017euje na \u017eivot\u011b. Jejich okol\u00ed si v\u0161ak \u010dasto mysl\u00ed, \u017ee jsou jen l\u00edn\u00ed. Nemoc nelze vyl\u00e9\u010dit, projevy lze pouze tlumit. Modern\u00ed biologickou l\u00e9\u010dbu dostanou jen ti, u nich\u017e selhaly v\u0161echny p\u0159ede\u0161l\u00e9 terapie. <\/strong><\/p>\n\n\n\n

\u201eProjevy myastenie gravis jsou z\u00e1visl\u00e9 na fyzick\u00e9 z\u00e1t\u011b\u017ei a pacient\u016fv stav v souvislosti s n\u00ed kol\u00eds\u00e1. Po odpo\u010dinku se zlep\u0161\u00ed, po fyzick\u00e9m vyp\u011bt\u00ed se zhor\u0161uje. Pacienti se proto obvykle r\u00e1no c\u00edt\u00ed l\u00e9pe a ve\u010der po celodenn\u00ed z\u00e1t\u011b\u017ei h\u016f\u0159,\u201c <\/em>vysv\u011btluje MUDr. Stanislav Voh\u00e1\u0148ka, CSc., MBA, z\u00e1stupce p\u0159ednosty Neurologick\u00e9 kliniky FN Brno a p\u0159edseda Neuromuskul\u00e1rn\u00ed sekce \u010cesk\u00e9 neurologick\u00e9 spole\u010dnosti. MG se nej\u010dast\u011bji projevuje posti\u017een\u00edm svalstva hlavy a krku, co\u017e zp\u016fsobuje pokles v\u00ed\u010dka, poruchy vid\u011bn\u00ed, kous\u00e1n\u00ed, polyk\u00e1n\u00ed nebo \u0159e\u010di. Pacienti \u010dasto nejsou schopni zvednout ruce nad hlavu a udr\u017eet v nich p\u0159edm\u011bty. Jsou velmi slab\u00ed, a pokud si neodpo\u010dinou, pot\u00ed\u017ee p\u0159etrv\u00e1vaj\u00ed.<\/p>\n\n\n\n

\u201eN\u011bkolikr\u00e1t se mi stalo, \u017ee jsem nemohla zvednout nohu, upadla jsem, nem\u011bla s\u00edlu se zvednout a\u00a0nemohla jsem mluvit. Kolemjdouc\u00ed si o mn\u011b mysleli, \u017ee jsem opil\u00e1, a obch\u00e1zeli m\u011b. Nemohla jsem si ani \u0159\u00edct o pomoc a vysv\u011btlit, co se d\u011bje,\u201c<\/em> popisuje sv\u00e9 zku\u0161enosti Miriam K\u0159ivkov\u00e1, kter\u00e1 s\u00a0nemoc\u00ed bojuje p\u0159es 40 let a z\u00e1rove\u0148 je ve v\u00fdboru pacientsk\u00e9 organizace MYGRA-CZ, je\u017e lidem s\u00a0MG pom\u00e1h\u00e1. Miriam K\u0159ivkov\u00e1 dokonce dvakr\u00e1t pro\u0161la tzv. myastenickou kriz\u00ed, co\u017e je\u017e \u017eivot ohro\u017euj\u00edc\u00ed stav. <\/p>\n\n\n\n

\u201eP\u0159i myastenick\u00e9 krizi maj\u00ed pacienti takov\u00e9 probl\u00e9my s\u00a0polyk\u00e1n\u00edm, \u017ee se mohou udusit stravou, z\u00e1rove\u0148 trp\u00ed v\u00e1\u017en\u00fdmi dechov\u00fdmi pot\u00ed\u017eemi, a mus\u00ed tak okam\u017eit\u011b do nemocnice, kde je napoj\u00edme na d\u00fdchac\u00ed p\u0159\u00edstroj,\u201c<\/em> popisuje MUDr. Voh\u00e1\u0148ka. Podle n\u011bj se p\u00e9\u010de o pacienty v\u00a0\u010cesku st\u00e1le zlep\u0161uje. Zat\u00edmco d\u0159\u00edve se \u017een\u00e1m s\u00a0MG nedoporu\u010dovalo m\u00edt d\u011bti, dnes t\u011bhotenstv\u00ed pod dohledem l\u00e9ka\u0159e zvl\u00e1daj\u00ed. Tak\u00e9 d\u00edky pokroku v\u00a0anestezii mohou pacienti s\u00a0MG absolvovat r\u016fzn\u00e9 operativn\u00ed z\u00e1kroky. V\u00fdvoj prod\u011blala tak\u00e9 l\u00e9\u010dba t\u00e9to choroby. \u201eMyastenie gravis je nevyl\u00e9\u010diteln\u00e1, pacient\u016fm v\u0161ak m\u016f\u017eeme nab\u00eddnout \u0159adu l\u00e9\u010debn\u00fdch metod, kter\u00e9 zm\u00edr\u0148uj\u00ed projevy nemoci. U lid\u00ed do 50 let je z\u00e1kladn\u00edm \u0159e\u0161en\u00edm odstran\u011bn\u00ed brzl\u00edku, co\u017e pom\u00e1h\u00e1 tlumit imunitn\u00ed reakce a zlep\u0161it progn\u00f3zu. Pro okam\u017eitou \u00falevu od obt\u00ed\u017e\u00ed vyu\u017e\u00edv\u00e1me l\u00e9ky, kter\u00e9 podporuj\u00ed nervosvalov\u00fd p\u0159enos. Dlouhodob\u011b pacienti u\u017e\u00edvaj\u00ed kortikoidy a imunosupresiva tlum\u00edc\u00ed tvorbu protil\u00e1tek zodpov\u011bdn\u00fdch za vznik obt\u00ed\u017e\u00ed,\u201c<\/em> \u0159\u00edk\u00e1 MUDr. Voh\u00e1\u0148ka. <\/p>\n\n\n\n

N\u00e1kladn\u011bj\u0161\u00ed l\u00e9\u010dbu, jako je plazmafer\u00e9za nebo imunoadsorpce, pomoc\u00ed nich\u017e l\u00e9ka\u0159i pacient\u016fm \u201e\u010dist\u00ed\u201c krev od protil\u00e1tek, poskytuj\u00ed pouze specializovan\u00e1 neuromuskul\u00e1rn\u00ed centra. T\u011bch je v\u00a0\u010cesku 11, v\u011bt\u0161ina pacient\u016f (80 %) se l\u00e9\u010d\u00ed ve t\u0159ech nejv\u011bt\u0161\u00edch \u2013 v\u00a0Praze, Brn\u011b a Ostrav\u011b. \u201eV sou\u010dasn\u00e9 dob\u011b se do praxe dost\u00e1v\u00e1 tak\u00e9 modern\u00ed biologick\u00e1 l\u00e9\u010dba, kter\u00e1 m\u00e1 dobr\u00fd efekt a m\u00e9n\u011b ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f. Je v\u0161ak zat\u00edm dostupn\u00e1 pouze pro ty, u nich\u017e selhaly ve\u0161ker\u00e9 p\u0159edchoz\u00ed l\u00e9\u010debn\u00e9 metody. Douf\u00e1m, \u017ee v\u00a0budoucnu bude mo\u017en\u00e9 ji na \u00fahradu poji\u0161\u0165oven p\u0159edepsat v\u011bt\u0161\u00edmu po\u010dtu pacient\u016f. Zejm\u00e9na t\u011bm, kte\u0159\u00ed trp\u00ed opakovan\u00fdmi myastenick\u00fdmi krizemi,\u201c<\/em> dod\u00e1v\u00e1 MUDr. Voh\u00e1\u0148ka. P\u0159esto\u017ee m\u00e9n\u011b n\u00e1kladn\u00e9 l\u00e9ky, kter\u00e9 u\u017e\u00edv\u00e1 80 % pacient\u016f s MG, jsou dostupn\u00e9 tak\u00e9 u neurolog\u016f mimo centra, doporu\u010duje MUDr. Voh\u00e1\u0148ka, aby se v\u0161ichni pacienti l\u00e9\u010dili na specializovan\u00fdch pracovi\u0161t\u00edch, kde jsou odborn\u00edci na MG. To potvrzuje i Miriam K\u0159ivkov\u00e1: \u201eDostat se do specializovan\u00e9ho centra je pro pacienty prvn\u00edm krokem ke zvl\u00e1d\u00e1n\u00ed nemoci. Probl\u00e9mem v\u0161ak \u010dasto je, \u017ee pacienti p\u0159\u00edznaky, zejm\u00e9na \u00fanavu, zpo\u010d\u00e1tku podce\u0148uj\u00ed a zbyte\u010dn\u011b se tr\u00e1p\u00ed.\u201c<\/em> Krom\u011b l\u00e9\u010dby pova\u017euje za d\u016fle\u017eitou tak\u00e9 podporu rodiny a bl\u00edzk\u00fdch, odpo\u010dinek a nalezen\u00ed cesty, jak s\u00a0nemoc\u00ed \u017e\u00edt.<\/p>\n\n\n\n

Pacientsk\u00e1 organizace MYGRA-CZ ve spolupr\u00e1ci s l\u00e9ka\u0159i a z\u00e1chrannou slu\u017ebou p\u0159ipravila kartu pacienta, kterou by m\u011bli lid\u00e9 s MG nosit u sebe a v krizov\u00fdch situac\u00edch p\u0159edkl\u00e1dat. Obsahuje z\u00e1kladn\u00ed informace o pacientovi, kontakty a d\u016fle\u017eit\u00e9 pokyny, jako kter\u00e9 l\u00e9ky nesm\u00ed lid\u00e9 s MG dostat, proto\u017ee zhor\u0161uj\u00ed projevy nemoci \u2013 nap\u0159\u00edklad n\u011bkter\u00e1 antibiotika, anestetika, benzodiazepiny nebo ho\u0159\u010d\u00edk.<\/p>\n\n\n\n

 \u201eZa posledn\u00edch p\u011bt let se n\u00e1m poda\u0159il v\u00fdznamn\u00fd posun v organizaci l\u00e9\u010dby vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a jej\u00edm zakotven\u00ed v \u010desk\u00e9 legislativ\u011b. D\u00edky t\u011bmto nov\u00fdm \u00faprav\u00e1m by se pacienti se vz\u00e1cn\u00fdmi onemocn\u011bn\u00edmi m\u011bli dostat sn\u00e1z k l\u00e9\u010db\u011b, o kterou doposud museli \u017e\u00e1dat jen prost\u0159ednictv\u00edm tzv. paragrafu 16 a ka\u017ed\u00e9 t\u0159i m\u011bs\u00edce m\u00edt obavu, jestli jim l\u00e9\u010dbu poji\u0161\u0165ovna schv\u00e1l\u00ed, \u010di nikoliv. Z\u00e1rove\u0148 do\u0161lo ke vzniku N\u00e1rodn\u00ed s\u00edt\u011b center pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed, v\u010detn\u011b t\u011bch, kde se l\u00e9\u010d\u00ed myastenie gravis,\u201c<\/em> vysv\u011btluje Bc. Anna Arellanesov\u00e1, p\u0159edsedkyn\u011b \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO).  <\/p>\n\n\n\n

Ke zlep\u0161ov\u00e1n\u00ed p\u00e9\u010de pom\u00e1h\u00e1 l\u00e9ka\u0159\u016fm registr pacient\u016f MyReg, kter\u00fd aktu\u00e1ln\u011b sleduje 1 500 osob s MG. Data z n\u011bj slou\u017e\u00ed k pozn\u00e1n\u00ed p\u0159irozen\u00e9ho pr\u016fb\u011bhu choroby, k optimalizaci l\u00e9\u010debn\u00fdch postup\u016f, pl\u00e1nov\u00e1n\u00ed kapacit a centralizaci p\u00e9\u010de. MyReg umo\u017e\u0148uje propojen\u00ed a srovn\u00e1v\u00e1n\u00ed informac\u00ed na mezin\u00e1rodn\u00ed \u00farovni. Jeho z\u0159izovatelem je \u010cesk\u00e1 neurologick\u00e1 spole\u010dnost.<\/p>\n\n\n\n

O MYGRA-CZ<\/strong><\/p>\n\n\n\n

MYGRA-CZ, z.s. je nez\u00e1visl\u00fd neziskov\u00fd spolek pacient\u016f s diagnostikovan\u00fdm onemocn\u011bn\u00edm myastenie gravis (MG), jejich rodinn\u00fdch p\u0159\u00edslu\u0161n\u00edk\u016f, odborn\u00edk\u016f se zam\u011b\u0159en\u00edm na problematiku tohoto onemocn\u011bn\u00ed a dobrovoln\u00fdch \u010dlen\u016f z \u0159ad \u0161irok\u00e9 ve\u0159ejnosti. Vznikl v\u00a0roce 2009 a zasazuje se o zvy\u0161ov\u00e1n\u00ed pov\u011bdom\u00ed o MG, po\u0159\u00e1d\u00e1 setk\u00e1n\u00ed pacient\u016f, vyd\u00e1v\u00e1 informa\u010dn\u00ed materi\u00e1ly o MG, provozuje poradnu. MYGRA-CZ je \u010dlenem \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed (\u010cAVO), kter\u00e1 sdru\u017euje 43 pacientsk\u00fdch organizac\u00ed a bojuje za zlep\u0161en\u00ed p\u00e9\u010de o pacienty se vz\u00e1cn\u00fdmi nemocemi, nejenom v\u00a0oblasti l\u00e9\u010dby. V\u00edce na www.mygra.cz<\/a> a www.vzacna-onemocneni.cz<\/a>.<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

K\u00a0moden\u00ed l\u00e9\u010db\u011b se dostane jen zlomek pacient\u016f Dvojit\u00e9 vid\u011bn\u00ed, neschopnost h\u00fdbat se, mluvit, polykat, nebo dokonce d\u00fdchat \u2013 to v\u0161e pat\u0159\u00ed mezi projevy vz\u00e1cn\u00e9ho autoimunitn\u00edho […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13872,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-41770","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\/41770","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=41770"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/41770\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13872"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=41770"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=41770"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=41770"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}