{"id":64023,"date":"2026-06-04T22:48:41","date_gmt":"2026-06-04T20:48:41","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=64023"},"modified":"2026-06-04T22:48:44","modified_gmt":"2026-06-04T20:48:44","slug":"kvuli-nemoci-prisla-o-chuzi-ne-vsak-o-sny","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=64023","title":{"rendered":"Kv\u016fli nemoci p\u0159i\u0161la o ch\u016fzi, ne v\u0161ak o sny"},"content":{"rendered":"\n

Kdy\u017e se Anna (20) z Kamenn\u00e9ho \u00dajezdu narodila, nikoho nenapadlo, \u017ee by mohla trp\u011bt v\u00e1\u017en\u00fdm onemocn\u011bn\u00edm. \u201eJako mal\u00e1 jsem byla klidn\u00e1 hol\u010di\u010dka a d\u011blala jsem b\u011b\u017en\u00e9 v\u011bci, kter\u00e9 miminka d\u011blaj\u00ed. Hr\u00e1la jsem si s hra\u010dkami, prohl\u00ed\u017eela si kn\u00ed\u017eky, velmi brzy jsem \u0159\u00edkala t\u0159\u00edslabi\u010dn\u00e1 slova a tak\u00e9 jsem m\u011bla dob\u0159e vyvinutou jemnou motoriku. Lezla jsem sice pomaleji a chodit se mi moc necht\u011blo, ale kdy\u017e m\u011b mamka postavila, tak jsem p\u00e1r kr\u016f\u010dk\u016f ud\u011blala. V\u017edy jsem se ale pot\u0159ebovala n\u011b\u010deho chytit a m\u00edt oporu,\u201c<\/em> popisuje Anna.<\/p>\n\n\n\n

P\u0159ibli\u017en\u011b v\u00a0roce se ale za\u010dalo v\u0161e v\u00fdrazn\u011b m\u011bnit. Postupn\u011b j\u00ed ochabovaly svaly, vid\u011bt to bylo hlavn\u011b na nohou. V\u00a016 m\u011bs\u00edc\u00edch u\u017e nedok\u00e1zala ani st\u00e1t. \u201eRodi\u010de mi \u0159\u00edkali, \u017ee jsem byla jako hadrov\u00e1 panenka,\u201c<\/em> \u0159\u00edk\u00e1 Anna. Pro rodinu tak za\u010dalo obdob\u00ed chozen\u00ed po vy\u0161et\u0159en\u00edch a hled\u00e1n\u00ed p\u0159\u00ed\u010diny Annina stavu. Kone\u010dnou diagn\u00f3zu se dozv\u011bd\u011bli na d\u011btsk\u00e9 neurologii v\u00a0Thomayerov\u011b nemocnici, kde Anna podstoupila genetick\u00e9 testy. Ty prok\u00e1zaly spin\u00e1ln\u00ed svalovou atrofii (SMA) II. typu. Nemoc, p\u0159i kter\u00e9 postupn\u011b ochabuje svalstvo, do t\u00e9 doby rodi\u010de Anny neznali. O to v\u011bt\u0161\u00ed pro n\u011b byl \u0161ok, kdy\u017e zjistili, \u017ee nemoc je nevyl\u00e9\u010diteln\u00e1 a neexistuje ani l\u00e9\u010dba, kter\u00e1 by ji zpomalovala.<\/p>\n\n\n\n

\u201eV\u016fbec si neum\u00edm p\u0159edstavit, co moji rodi\u010de a sourozenci museli pro\u017e\u00edvat a\u00a0jak muselo b\u00fdt t\u011b\u017ek\u00e9 sly\u0161et v\u011bty o tom, \u017ee je mo\u017en\u00e9, \u017ee brzy zem\u0159u, a a\u0165 se na m\u011b rad\u011bji neup\u00ednaj\u00ed. Pro ka\u017ed\u00e9ho rodi\u010de je tohle no\u010dn\u00ed m\u016fra, nev\u011bd\u011bt, jak to bude za p\u00e1r let a jestli tady jejich d\u00edt\u011b je\u0161t\u011b v\u016fbec bude,\u201c<\/em> popisuje Anna, kter\u00e1 se od t\u00e9 doby pohybuje na invalidn\u00edm voz\u00edku. Nejprve na mechanick\u00e9m, na n\u011bm\u017e ji vozili jej\u00ed rodi\u010de, nyn\u00ed pou\u017e\u00edv\u00e1 elektrick\u00fd, kter\u00fd ji\u017e ovl\u00e1d\u00e1 sama. Nem\u016f\u017ee chodit, svaly j\u00ed ochabuj\u00ed i v\u00a0oblasti hrudn\u00edku, funkci rukou m\u00e1 zachovanou.<\/p>\n\n\n\n

\u201ePo prvotn\u00edm \u0161oku jsme se museli nau\u010dit s nemoc\u00ed bojovat a mysl\u00edm si, \u017ee j\u00e1, a\u00a0hlavn\u011b moje rodina jsme to dok\u00e1zali, i kdy\u017e to nebylo jednoduch\u00e9. Rodi\u010de m\u011b nikdy moc ne\u0161et\u0159ili a sna\u017eili se m\u011b v\u00e9st k\u00a0co nejv\u011bt\u0161\u00ed samostatnosti, za co\u017e jsem jim moc vd\u011b\u010dn\u00e1,\u201c<\/em> popisuje Anna. Za sv\u016fj \u017eivot si pro\u0161la \u0159adou t\u011b\u017ek\u00fdch chvil, v\u017edy je ale zvl\u00e1dla p\u0159ekonat a naj\u00edt si cestu, jak se posunout d\u00e1l. <\/p>\n\n\n\n

Od\u00a0\u0161esti let se j\u00ed zhor\u0161ovala skoli\u00f3za, proto\u017ee jej\u00ed svaly neum\u00ed dob\u0159e dr\u017eet p\u00e1te\u0159. V\u00a0deseti letech musela absolvovat operaci, po kter\u00e9 p\u016fl roku jenom le\u017eela. Rodi\u010de ji vozili na speci\u00e1ln\u00edm elektrick\u00e9m voz\u00edku, kter\u00fd \u0161lo polohovat podle toho, jak to jej\u00ed stav dovoloval. Kv\u016fli nemoci nebylo pro Annu jednoduch\u00e9 ani studium, ale jak na z\u00e1kladn\u00ed, tak na st\u0159edn\u00ed \u0161kole j\u00ed vych\u00e1zeli vst\u0159\u00edc. M\u011bla individu\u00e1ln\u00ed vzd\u011bl\u00e1vac\u00ed pl\u00e1n, z\u00e1kladn\u00ed \u0161kola byla bezbari\u00e9rov\u00e1, st\u0159edn\u00ed si vybrala podle dostupnosti.<\/p>\n\n\n\n

\u201eMusela jsem se vzd\u00e1t snu o tom, \u017ee budu zdravotn\u00ed sestra nebo dispe\u010derka na z\u00e1chrance. \u0160kolu se v\u0161emi praxemi bych kv\u016fli sv\u00e9 nemoci nezvl\u00e1dla absolvovat,\u201c<\/em> vysv\u011btluje Anna. U oboru ale cht\u011bla z\u016fstat. Vybrala si proto zdravotnick\u00e9 lyceum. Po n\u011bm nastoupila na vysokou \u0161kolu v\u00a0\u010cesk\u00fdch Bud\u011bjovic\u00edch na obor pedagogika voln\u00e9ho \u010dasu, nyn\u00ed je ve druh\u00e9m ro\u010dn\u00edku. Do \u0161koly ji voz\u00ed rodi\u010de nebo jezd\u00ed sama autobusem. <\/p>\n\n\n\n

\u201ePr\u00e1ce s\u00a0d\u011btmi m\u011b moc bav\u00ed a samotn\u00e9 studium zvl\u00e1d\u00e1m bez probl\u00e9m\u016f. S\u00a0\u010d\u00edm ale ob\u010das bojuji, je to, \u017ee kv\u016fli sv\u00e9 nemoci mus\u00edm lidem dokazovat, \u017ee na tuto profesi m\u00e1m,\u201c <\/em>\u0159\u00edk\u00e1. D\u011btem se v\u011bnuje i ve sv\u00e9m voln\u00e9m \u010dase jako vedouc\u00ed na t\u00e1borech jak pro zdrav\u00e9, tak pro d\u011bti se SMA. Na sv\u00e9 vysoko\u0161kolsk\u00e9 studium by cht\u011bla nav\u00e1zat je\u0161t\u011b oborem zdravotn\u011b-soci\u00e1ln\u00ed p\u00e9\u010de a logopedie. V\u00a0pl\u00e1nech do budoucna ji motivuje i l\u00e9\u010dba, kter\u00e1 je nyn\u00ed pacient\u016fm se SMA v \u010cesku dostupn\u00e1 a kter\u00e1 m\u016f\u017ee postup nemoci zpomalit. <\/p>\n\n\n\n

\u201eOd t\u00e9 doby, co l\u00e9\u010dbu u\u017e\u00edv\u00e1m, se m\u016fj stav nezhor\u0161uje, co\u017e mi d\u00e1v\u00e1 nad\u011bji, \u017ee m\u011b nemoc nebude omezovat v\u00edce ne\u017e te\u010f. A t\u0159eba se v\u00a0budoucnu objev\u00ed dal\u0161\u00ed l\u00e9ky, kter\u00e9 by mohly m\u016fj stav i zlep\u0161it.\u201c<\/em> Anna se l\u00e9\u010d\u00ed ve specializovan\u00e9m centru v\u00a0Brn\u011b, kam doj\u00ed\u017ed\u00ed na kontroly. O sv\u00e9 nemoci otev\u0159en\u011b mluv\u00ed, nap\u0159\u00edklad v\u00a0podcastu NeSMAzateln\u00ed<\/u><\/a>.<\/p>\n\n\n\n

Koment\u00e1\u0159 o\u0161et\u0159uj\u00edc\u00ed l\u00e9ka\u0159ky MUDr. Olesji Parmov\u00e9, DiS., Ph.D., z\u202fNeuromuskul\u00e1rn\u00edho centra Neurologick\u00e9 kliniky Fakultn\u00ed nemocnice Brno:<\/strong><\/p>\n\n\n\n

\u201eSpin\u00e1ln\u00ed svalov\u00e1 atrofie (SMA) je d\u011bdi\u010dn\u00e9 nervosvalov\u00e9 onemocn\u011bn\u00ed, p\u0159i kter\u00e9m t\u011blo postupn\u011b ztr\u00e1c\u00ed schopnost ovl\u00e1dat svaly. To m\u016f\u017ee v\u00e9st nap\u0159\u00edklad k pot\u00ed\u017e\u00edm s ch\u016fz\u00ed, ztr\u00e1t\u011b s\u00edly v rukou a nohou, k obt\u00ed\u017e\u00edm s polyk\u00e1n\u00edm nebo d\u00fdch\u00e1n\u00edm. U t\u011b\u017e\u0161\u00edch forem onemocn\u011bn\u00ed jsou pacienti \u010dasto z\u00e1visl\u00ed na pomoci druh\u00fdch i p\u0159i b\u011b\u017en\u00fdch denn\u00edch \u010dinnostech. SMA m\u00e1 n\u011bkolik forem, kter\u00e9 se li\u0161\u00ed v\u011bkem n\u00e1stupu p\u0159\u00edznak\u016f, z\u00e1va\u017enost\u00ed svalov\u00e9 slabosti i rychlost\u00ed progrese onemocn\u011bn\u00ed. Proto je d\u016fle\u017eit\u00e9 p\u0159istupovat ke ka\u017ed\u00e9mu pacientovi individu\u00e1ln\u011b. Dnes ji\u017e existuje modern\u00ed terapie, kter\u00e1 dok\u00e1\u017ee pr\u016fb\u011bh onemocn\u011bn\u00ed v\u00fdznamn\u011b zpomalit a u n\u011bkter\u00fdch pacient\u016f p\u0159in\u00e9st i zlep\u0161en\u00ed jejich stavu. P\u0159esto v\u0161ak l\u00e9\u010dba v\u011bt\u0161inou neznamen\u00e1 \u00fapln\u00e9 vyl\u00e9\u010den\u00ed.<\/em><\/p>\n\n\n\n

Anna p\u0159e\u0161la do p\u00e9\u010de Neuromuskul\u00e1rn\u00edho centra, je\u017e l\u00e9\u010d\u00ed dosp\u011bl\u00e9, p\u0159ed dv\u011bma lety. Od d\u011btstv\u00ed \u017eije s t\u011b\u017ekou formou SMA, kter\u00e1 vedla k v\u00fdrazn\u00e9mu hybn\u00e9mu omezen\u00ed a postupn\u00e9 ztr\u00e1t\u011b samostatnosti. K pohybu vyu\u017e\u00edv\u00e1 elektrick\u00fd voz\u00edk a v b\u011b\u017en\u00e9m dom\u00e1c\u00edm prost\u0159ed\u00ed pot\u0159ebuje pomoc druh\u00fdch t\u00e9m\u011b\u0159 p\u0159i v\u0161ech ka\u017edodenn\u00edch \u010dinnostech. P\u0159esto v\u0161ak z\u016fst\u00e1v\u00e1 velmi aktivn\u00ed a pravideln\u011b rehabilituje. Navzdory sv\u00e9mu zdravotn\u00edmu handicapu pl\u00e1nuje osamostatnit se, chce bydlet ve vlastn\u00edm byt\u011b a fungovat s podporou osobn\u00ed asistence. Pr\u00e1v\u011b touha po nez\u00e1vislosti, studiu, pr\u00e1ci a b\u011b\u017en\u00e9m \u017eivot\u011b je pro mnoho pacient\u016f se SMA typick\u00e1 a \u010dasto obdivuhodn\u00e1.\u201c<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Kdy\u017e se Anna (20) z Kamenn\u00e9ho \u00dajezdu narodila, nikoho nenapadlo, \u017ee by mohla trp\u011bt v\u00e1\u017en\u00fdm onemocn\u011bn\u00edm. \u201eJako mal\u00e1 jsem byla klidn\u00e1 hol\u010di\u010dka a d\u011blala jsem b\u011b\u017en\u00e9 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":904,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-64023","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\/64023","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=64023"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64023\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/904"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64023"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64023"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64023"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}