<\/p>\n\n\n\n
L\u00e9\u010dba roztrou\u0161en\u00e9 skler\u00f3zy za\u017e\u00edv\u00e1 v\u00a0\u010cesku revoluci. K\u00a0pacient\u016fm se dost\u00e1vaj\u00ed hned po prvn\u00ed atace vysoce \u00fa\u010dinn\u00e9 l\u00e9ky, na kter\u00e9 d\u0159\u00edve museli dlouho \u010dekat. Jak jsou tyto l\u00e9ky \u00fa\u010dinn\u00e9 a bezpe\u010dn\u00e9, nyn\u00ed l\u00e9ka\u0159i ost\u0159e sleduj\u00ed prost\u0159ednictv\u00edm registru pacient\u016f s\u00a0roztrou\u0161enou skler\u00f3zou ReMuS. Ten letos oslav\u00ed 10let\u00e9 v\u00fdro\u010d\u00ed \u2013 nejnov\u011bj\u0161\u00ed data tradi\u010dn\u011b vyd\u00e1v\u00e1 p\u0159i\u00a0p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne roztrou\u0161en\u00e9 skler\u00f3zy, kter\u00fd p\u0159ipad\u00e1 na 30. kv\u011btna.<\/strong><\/p>\n\n\n\n \u201eP\u0159i\u0161la nov\u00e1 l\u00e9\u010diva a dramaticky zlep\u0161ila osudy nemocn\u00fdch. Proto\u017ee jsou efektivn\u00ed, nesou s sebou v\u00edce ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f. Roztrou\u0161en\u00e1 skler\u00f3za \u010dasto propuk\u00e1 v\u00a0mlad\u0161\u00edm v\u011bku, a proto mus\u00edme pe\u010dliv\u011b sledovat, jak se l\u00e9ky chovaj\u00ed v\u00a0t\u011ble pacient\u016f po 10, 20 letech od nasazen\u00ed \u2013 zda nezp\u016fsobuj\u00ed jin\u00e9 probl\u00e9my. K tomu pot\u0159ebujeme co nejv\u00edce dat, nap\u0159\u00edklad z registru ReMuS. Nov\u00e1 l\u00e9\u010dba je nav\u00edc drah\u00e1, a bez dat jasn\u011b prokazuj\u00edc\u00edch jej\u00ed \u00fa\u010dinek, by se k\u00a0n\u00ed \u010de\u0161t\u00ed pacienti dost\u00e1vali t\u011b\u017eko,\u201c <\/em>vysv\u011btluje neurolo\u017eka a<\/em> odborn\u00e1 garantka registru ReMuS doc. MUDr. Dana Hor\u00e1kov\u00e1.<\/p>\n\n\n\n Rychle nasazen\u00e1 vysoce efektivn\u00ed l\u00e9\u010dba m\u016f\u017ee odd\u00e1lit n\u00e1stup invalidity a\u017e o 10 let \u2013 \u0159\u00edk\u00e1 vedouc\u00ed Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed Neurologick\u00e9 kliniky 1. LF UK a VFN v\u00a0Praze prof. MUDr. Eva Kubala Havrdov\u00e1. \u201eZcela m\u011bn\u00ed progn\u00f3zu roztrou\u0161en\u00e9 skler\u00f3zy. R\u00e1di bychom do konce leto\u0161n\u00edho roku nasazovali tuto l\u00e9\u010dbu 60\u201370 % nov\u011b diagnostikovan\u00fdch pacient\u016f \u2013 p\u016fvodn\u011b to bylo pouze kolem 20 %. Pro srovn\u00e1n\u00ed, ve \u0160v\u00e9dsku u\u017e\u00edv\u00e1 vysoce efektivn\u00ed l\u00e9ky od za\u010d\u00e1tku nemoci asi 90 % pacient\u016f,\u201c <\/em>dopl\u0148uje neurolo\u017eka. V\u00a0\u010cesku ka\u017ed\u00fd rok p\u0159ibude 700 a\u017e 800 nemocn\u00fdch.<\/p>\n\n\n\n Pro to, aby mohli odborn\u00edci sb\u00edrat a vyhodnocovat data a monitorovat p\u0159\u00edpadn\u00e1 bezpe\u010dnostn\u00ed rizika, mus\u00ed letos po\u017e\u00e1dat v\u0161echny pacienty v registru o nov\u00fd informovan\u00fd souhlas. \u201eAbychom z\u00edskali n\u011bkter\u00e9 \u00fadaje, pot\u0159ebujeme sesb\u00edrat data alespo\u0148 od 50 000 lid\u00ed, a tolik jich v \u010desk\u00e9m registru nem\u00e1me. Proto je d\u016fle\u017eit\u00e9 jej propojit se zahrani\u010d\u00edm a k tomu pot\u0159ebujeme souhlas pacient\u016f. M\u016f\u017eeme pak rychle zas\u00e1hnout a varovat, pokud by se v budoucnu uk\u00e1zalo, \u017ee n\u011bkter\u00e9 l\u00e9ky nejsou pro ur\u010dit\u00e9 pacienty dostate\u010dn\u011b bezpe\u010dn\u00e9,\u201c<\/em> \u0159\u00edk\u00e1 doc. Hor\u00e1kov\u00e1.<\/p>\n\n\n\n \u010cesk\u00fd registr ReMuS pat\u0159\u00ed k nejv\u011bt\u0161\u00edm v Evrop\u011b. \u201eD\u00edky dat\u016fm v n\u011bm obsa\u017een\u00fdm m\u016f\u017eeme reagovat i na tak nenad\u00e1lou situaci, jakou byla nap\u0159\u00edklad epidemie covidu-19, kdy se \u0159e\u0161ilo, jak nemoc \u010di vakcinace ovliv\u0148uje pacienty s roztrou\u0161enou skler\u00f3zou. Revolu\u010dn\u00ed je pak mo\u017enost propojen\u00ed registru s daty zdravotn\u00edch poji\u0161\u0165oven. Bez nich by n\u011bkter\u00e9 v\u00fdzkumy v\u016fbec nebyly provediteln\u00e9. Do budoucna se jedn\u00e1 nap\u0159\u00edklad o zkoum\u00e1n\u00ed toho, jak lze roztrou\u0161enou skler\u00f3zu zachytit je\u0161t\u011b p\u0159ed prvn\u00edm klinick\u00fdm projevem. To by l\u00e9ka\u0159\u016fm umo\u017enilo zas\u00e1hnout opravdu v\u010das,\u201c<\/em> komentuje \u0159editel registru ReMuS Ing. Ji\u0159\u00ed Drahota a dod\u00e1v\u00e1, \u017ee se po\u010det lid\u00ed s roztrou\u0161enou skler\u00f3zou v registru v lo\u0148sk\u00e9m roce vy\u0161plhal na 20 274, z toho 15 459 pacient\u016f je na biologick\u00e9 l\u00e9\u010db\u011b a 4 815 ne.<\/p>\n\n\n\n S\u00a0pomoc\u00ed ReMuSu l\u00e9ka\u0159i nap\u0159\u00edklad loni sledovali, jak roztrou\u0161enou skler\u00f3zu ovliv\u0148uje kojen\u00ed, a to konkr\u00e9tn\u011b u 1681 t\u011bhotenstv\u00ed. Pozorovali, jak se nemoc chov\u00e1 u \u017een, kter\u00e9 vysadily l\u00e9\u010dbu a kojily t\u0159i a v\u00edce m\u011bs\u00edc\u016f, ve srovn\u00e1n\u00ed s t\u011bmi, kter\u00e9 nekojily a hned po porodu zah\u00e1jily terapii. Zjistili, \u017ee kojen\u00ed u \u017een s RS nem\u011blo negativn\u00ed vliv <\/strong>na pr\u016fb\u011bh onemocn\u011bn\u00ed a jejich stav byl srovnateln\u00fd s\u00a0t\u011bmi, kter\u00e9 nekojily v\u016fbec. <\/p>\n\n\n\n \u201eTyto v\u00fdsledky, kter\u00e9 samoz\u0159ejm\u011b mus\u00ed potvrdit je\u0161t\u011b odborn\u00e9 studie, jsou pro n\u00e1s velmi d\u016fle\u017eit\u00e9. Maminky s RS, cht\u011bj\u00ed kojit jako v\u0161echny ostatn\u00ed, ale vzhledem k\u00a0tomu, \u017ee obdob\u00ed po porodu s sebou nese vy\u0161\u0161\u00ed riziko relaps\u016f a pokro\u010den\u00ed nemoci, panuj\u00ed kolem kojen\u00ed obavy. Data z\u00a0registru v\u0161ak siln\u011b nazna\u010duj\u00ed, \u017ee se \u017eeny s\u00a0RS nemus\u00ed kojen\u00ed ob\u00e1vat, pokud je jejich nemoc stabilizovan\u00e1. Vzhledem k\u00a0tomu, \u017ee nov\u011b u\u017e mohou u\u017e\u00edvat n\u011bkter\u00e9 l\u00e9ky na RS i b\u011bhem t\u011bhotenstv\u00ed a kojen\u00ed, bude d\u016fle\u017eit\u00e9 sledovat zdravotn\u00ed stav t\u00e9to skupiny v\u00a0registru v\u00a0dal\u0161\u00edch letech. Tato zji\u0161t\u011bn\u00ed by mohla pomoci \u017een\u00e1m s RS, kter\u00e9 pl\u00e1nuj\u00ed t\u011bhotenstv\u00ed nebo ji\u017e t\u011bhotn\u00e9 jsou, usnadnit jejich rozhodov\u00e1n\u00ed,\u201c \u0159\u00edk\u00e1<\/em> MUDr. Pavel Hrad\u00edlek, z Centra pro diagnostiku a l\u00e9\u010dbu demyeliniza\u010dn\u00edch onemocn\u011bn\u00ed Neurologick\u00e9 kliniky FN Ostrava a LF OU. \u201eSt\u00e1le plat\u00ed, \u017ee t\u011bhotenstv\u00ed a kojen\u00ed je t\u0159eba p\u0159edem pl\u00e1novat a konzultovat s\u00a0l\u00e9ka\u0159em,\u201c <\/em>dopl\u0148uje l\u00e9ka\u0159. Podle dat z\u00a0registru ReMuS loni v\u00a0\u010cesku porodilo 206 pacientek s\u00a0RS.<\/p>\n\n\n\n Z registru d\u00e1le vypl\u00fdv\u00e1, \u017ee se ve v\u0161ech 15 centrech pro l\u00e9\u010dbu roztrou\u0161en\u00e9 skler\u00f3zy v roce 2022 l\u00e9\u010dilo 71,19 % \u017een a 28,81 % mu\u017e\u016f. Pr\u016fm\u011brn\u00fd v\u011bk v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed byl 32,63 let. Nejv\u00edce pacient\u016f bylo z Prahy (16,4 %). Naopak nejm\u00e9n\u011b (3 011) z Karlovarsk\u00e9ho kraje. V\u00edce ne\u017e polovina pacient\u016f s nasazenou biologickou l\u00e9\u010dbou pracovala na pln\u00fd \u00favazek (61,47 %) a dal\u0161\u00edch 17,23 % na \u010d\u00e1ste\u010dn\u00fd \u00favazek. Z t\u011bch, co biologickou l\u00e9\u010dbu nem\u011bli, nepracovalo 52,07 % pacient\u016f. Invalidn\u00ed d\u016fchod 3. stupn\u011b pob\u00edralo 9,33 % pacient\u016f na biologick\u00e9 l\u00e9\u010db\u011b a 36,67 % bez n\u00ed. <\/p>\n\n\n\n O roztrou\u0161en\u00e9 skler\u00f3ze<\/strong><\/p>\n\n\n\n Roztrou\u0161en\u00e1 skler\u00f3za (RS) je chronick\u00e9 z\u00e1n\u011btliv\u00e9 onemocn\u011bn\u00ed centr\u00e1ln\u00edho nervov\u00e9ho syst\u00e9mu, jeho\u017e p\u0159\u00ed\u010dina nen\u00ed doposud zn\u00e1m\u00e1. Toto onemocn\u011bn\u00ed propuk\u00e1 v\u011bt\u0161inou v mlad\u0161\u00edm v\u011bku, \u010dast\u011bji postihuje \u017eeny. Pro RS je typick\u00e9 st\u0159\u00edd\u00e1n\u00ed obdob\u00ed z\u00e1chvat\u016f (atak) a obdob\u00ed zd\u00e1nliv\u00e9ho klidu. Tento proces je nep\u0159edv\u00eddateln\u00fd, a proto i l\u00e9\u010dba \u010di prevence je t\u011b\u017ek\u00e1. Na cel\u00e9m sv\u011bt\u011b trp\u00ed RS 2,5 milionu nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 22 tis\u00edc. Nemoc se vyskytuje p\u0159edev\u0161\u00edm ve st\u0159edn\u00edch a chladn\u011bj\u0161\u00edch zem\u011bpisn\u00fdch \u0161\u00ed\u0159k\u00e1ch. Rizikov\u00fdmi faktory nemoci jsou krom\u011b genetick\u00e9 dispozice EB virus (Epsteina-Barrov\u00e9 virus), kou\u0159en\u00ed a nedostatek vitaminu D.<\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" L\u00e9\u010dba roztrou\u0161en\u00e9 skler\u00f3zy za\u017e\u00edv\u00e1 v\u00a0\u010cesku revoluci. K\u00a0pacient\u016fm se dost\u00e1vaj\u00ed hned po prvn\u00ed atace vysoce \u00fa\u010dinn\u00e9 l\u00e9ky, na kter\u00e9 d\u0159\u00edve museli dlouho \u010dekat. Jak jsou tyto […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17229,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-39832","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/39832","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=39832"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/39832\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17229"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=39832"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=39832"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=39832"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}