Kdy\u017e p\u0159ed \u010dty\u0159iceti lety odch\u00e1zel \u010dlov\u011bk z ordinace s informac\u00ed, \u017ee za\u0161kobrtnut\u00ed, k\u0159e\u010de v ruce a dal\u0161\u00ed nen\u00e1padn\u00e9 projevy jsou p\u0159\u00edznaky ob\u00e1van\u00e9ho onemocn\u011bn\u00ed centr\u00e1ln\u00edho nervov\u00e9ho syst\u00e9mu, rovnalo se to informaci, jako by mu z krve vy\u010detli AIDS.<\/p>\n\n\n\n
Nemocn\u00e9ho d\u0159\u00edve \u010dekala b\u011bhem n\u011bkolika m\u00e1lo p\u0159\u00ed\u0161t\u00edch let invalidita, ztr\u00e1ta hybnosti a \u010dek\u00e1n\u00ed na konec na l\u016f\u017eku. V\u00fdznamn\u00fd pokrok ve farmacii sice \u00fapln\u00e9 vyl\u00e9\u010den\u00ed nena\u0161el. Ale medikamenty, zvl\u00e1\u0161t\u011b ty vysoce \u00fa\u010dinn\u00e9, kter\u00e9 se d\u0159\u00edve, kv\u016fli zna\u010dn\u00e9 cen\u011b nasazovaly a\u017e ve druh\u00e9m stupni l\u00e9\u010den\u00ed, se nyn\u00ed dost\u00e1vaj\u00ed k pacient\u016fm mnohem \u010dast\u011bji.
Jejich \u017eivot se i p\u0159es nel\u00e9\u010ditelnost nemoci v\u00fdznamn\u011b uleh\u010dil, l\u00e9\u010dba umo\u017e\u0148uje \u017eivotn\u00ed aktivity neporovnateln\u011b d\u00e9le a p\u0159\u00edjemn\u011bji ne\u017e je\u0161t\u011b v ned\u00e1vn\u00e9 minulosti. „R\u00e1di bychom je letos nasazovali a\u017e sedmdes\u00e1ti procent\u016fm pacient\u016f, d\u0159\u00edve to bylo jen dvacet procent,“ p\u0159eje si Eva Kubala Havrdov\u00e1, neurolo\u017eka z Neurologick\u00e9 kliniky 1. l\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy a V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v Praze. P\u0159esto by si ale taky p\u0159\u00e1la, aby se vysoce \u00fa\u010dinn\u00e1 l\u00e9\u010dba dostala ke stejn\u00e9mu mno\u017estv\u00ed pacient\u016f jako ve \u0160v\u00e9dsku, kter\u00e9 je s devades\u00e1ti procenty na evropsk\u00e9m vrcholu. Roztrou\u0161en\u00e1 skler\u00f3za se objevuje p\u0159ev\u00e1\u017en\u011b mezi 20. a\u017e 40. rokem v\u011bku, a nav\u00edc postihuje v\u00edce \u017eeny ne\u017e mu\u017ee. Pr\u00e1v\u011b \u017eeny to limituje v jejich p\u0159\u00e1n\u00ed st\u00e1t se matkou. Gravidita a n\u00e1sledn\u00e9 kojen\u00ed toti\u017e vy\u017eaduje vysazen\u00ed nebo minim\u00e1ln\u011b v\u00fdrazn\u00e9 omezen\u00ed l\u00e9k\u016f proti chorob\u011b.<\/p>\n\n\n\n
Ka\u017ed\u00e9 p\u0159eru\u0161en\u00ed l\u00e9\u010dby m\u016f\u017ee ovlivnit u pacientky, \u017ee se zkr\u00e1t\u00ed doba, kdy budou l\u00e9ky oddalovat v\u00fdrazn\u011bj\u0161\u00ed projevy roztrou\u0161en\u00e9 skler\u00f3zy. A taky p\u0159ibli\u017eovat dobu, kdy bude nemoc spojena s invaliditou. Nic z toho se pak ned\u00e1 u\u017e l\u00e9\u010debn\u011b doh\u00e1n\u011bt.
\u017deny s ereskou, jak se nemoci tak\u00e9 \u0159\u00edk\u00e1, stoj\u00ed proto p\u0159ed n\u011bkdy a\u017e fat\u00e1ln\u00ed volbou. M\u00edt potomka, ale zkr\u00e1tit si zdrav\u00fd \u017eivot o t\u00fddny, m\u011bs\u00edce nebo mo\u017en\u00e1 i roky, ale d\u00e1t \u0161anci na \u017eivot d\u00edt\u011bti a pro\u017e\u00edt si s n\u00edm a rodinou neopakovateln\u00fd \u010das? Nebo b\u00fdt na sv\u011bt\u011b o n\u011bco d\u00e9le, relativn\u011b zdrav\u00e1 co nejd\u00e9le, ale bez mate\u0159sk\u00e9ho pro\u017e\u00edv\u00e1n\u00ed \u017eivota?
„Je to velice t\u011b\u017ek\u00e1 volba, ale ze zku\u0161enost\u00ed v\u00edm, \u017ee si to \u017eeny vymluvit nenechaj\u00ed,“ podot\u00fdk\u00e1 neurolog Pavel Hrad\u00edlek z Centra pro diagnostiku a l\u00e9\u010dbu demyeliniza\u010dn\u00edch onemocn\u011bn\u00ed ve Fakultn\u00ed nemocnici Ostrava. „M\u00e1m pacientky, kter\u00e9 dokonce pl\u00e1nuj\u00ed u\u017e druh\u00e9ho potomka. Rozhodn\u011b v\u0161ak cht\u011bj\u00ed zn\u00e1t v\u0161echna rizika,“ \u0159\u00edk\u00e1 Hrad\u00edlek. D\u016fle\u017eit\u00e9 je, aby se pokou\u0161ely o ot\u011bhotn\u011bn\u00ed co nejd\u0159\u00edve po atace choroby, kter\u00e1 v\u017edy odezn\u00edv\u00e1 i n\u011bkolik t\u00fddn\u016f.
P\u0159esto i on za\u017e\u00edv\u00e1 s budouc\u00edmi maminkami vesel\u00e9 chv\u00edle. Jedna z nich u n\u011bho pr\u00fd s \u00fasm\u011bvem konstatovala, \u017ee si cel\u00fd \u017eivot myslela, \u017ee t\u011bhotenstv\u00ed bude pl\u00e1novat s gynekologem, a najednou ho pl\u00e1nuje s neurologem.<\/p>\n\n\n\n
V\u0161echny vlivy vysoce \u00fa\u010dinn\u00fdch l\u00e9\u010div na proces t\u011bhotenstv\u00ed a n\u00e1sledn\u00e9 kojen\u00ed a samoz\u0159ejm\u011b na mo\u017en\u00e9 zpomalen\u00ed l\u00e9\u010dby se dokto\u0159i neust\u00e1le sna\u017e\u00ed co nejpodrobn\u011bji sledovat a mapovat. V sou\u010dasnosti maj\u00ed pot\u0159ebn\u00e1 data asi o sedmn\u00e1cti stech t\u011bhotenstv\u00edch maminek s ereskou.
Informace o pacientech, nejen mamink\u00e1ch, a podrobnosti o nemoci shroma\u017e\u010fuje v \u010cesku pacientsk\u00fd registr ReMuS. Aby se mohla vyhodnotit p\u0159\u00edpadn\u00e1 bezpe\u010dnostn\u00ed rizika, pot\u0159ebuj\u00ed l\u00e9ka\u0159i data minim\u00e1ln\u011b o pades\u00e1ti tis\u00edc\u00edch pacient\u016f. Tolik jich ale v \u010desk\u00e9 datab\u00e1zi nen\u00ed. Moment\u00e1ln\u011b proto z\u00edsk\u00e1v\u00e1 ReMuS od \u010desk\u00fdch pacient\u016f povolen\u00ed, aby sm\u011bl jejich \u00fadaje propojit s podobn\u00fdmi registry v zahrani\u010d\u00ed. „M\u00e1me jich v registru n\u011bco p\u0159es dvacet tis\u00edc. V\u00edce informac\u00ed, v\u010detn\u011b dat od zdravotn\u00edch poji\u0161\u0165oven, by mohlo p\u0159isp\u011bt i ke zkoum\u00e1n\u00ed toho, zda nelze nemoc odhalit je\u0161t\u011b p\u0159ed jej\u00edmi prvn\u00edmi klinick\u00fdmi projevy,“ vysv\u011btluje Ji\u0159\u00ed Drahota, \u0159editel registru ReMuS.
Dlouhodob\u00e9 sledov\u00e1n\u00ed ukazuje, \u017ee pokud je choroba u t\u011bhotn\u00e9 pacientky stabilizovan\u00e1, nen\u00ed nutn\u00e9 n\u011bkter\u00e1 z nov\u00fdch farmak vysazovat ani p\u0159i kojen\u00ed. „Je v\u0161ak pot\u0159ebn\u00e9 tyto skupiny \u017een st\u00e1le sledovat a ukl\u00e1dat v\u0161e do datab\u00e1ze registru. Proto\u017ee by to mohlo v\u00fdznamn\u011b sn\u00ed\u017eit obavy \u017een p\u0159ed ot\u011bhotn\u011bn\u00edm a pochopiteln\u011b usnadnit jejich rozhodov\u00e1n\u00ed,“ dopl\u0148uje ze zku\u0161enost\u00ed neurolog Pavel Hrad\u00edlek.<\/p>\n\n\n\n
RO\u010cN\u00cd BILANCE<\/p>\n\n\n\n
800 A\u017e tolik lid\u00ed si vyslechne v \u010cesku ka\u017edoro\u010dn\u011b od l\u00e9ka\u0159\u016f, \u017ee jim diagnostikovali roztrou\u0161enou skler\u00f3zu. V \u010cesk\u00e9 republice ji m\u00e1 ve zdravotn\u00ed dokumentaci uvedenou n\u011bco p\u0159es dvacet tis\u00edc pacient\u016f. Ve sv\u011bt\u011b postihuje tako choroba necel\u00e9 t\u0159i miliony lid\u00ed. ReMuS<\/p>\n\n\n\n
BIO POM\u00c1H\u00c1<\/p>\n\n\n\n
Vysoce \u00fa\u010dinn\u00e1 biologick\u00e1 l\u00e9\u010dba je sice drah\u00e1, ale m\u00e1 ekonomick\u00e9 p\u0159\u00ednosy. – Biologickou l\u00e9\u010dbu m\u00e1 v \u010cesku v sou\u010dasnosti nasazeno v\u00edce ne\u017e 15 tis\u00edc pacient\u016f ze zhruba 20 tis\u00edc registrovan\u00fdch. – P\u0159es \u0161edes\u00e1t procent pacient\u016feresk\u00e1\u0159\u016f s bio l\u00e9\u010dbou pracuje na pln\u00fd \u00favazek a nemus\u00ed pob\u00edrat invalidn\u00ed<\/strong> d\u016fchod<\/p>\n","protected":false},"excerpt":{"rendered":" Kdy\u017e p\u0159ed \u010dty\u0159iceti lety odch\u00e1zel \u010dlov\u011bk z ordinace s informac\u00ed, \u017ee za\u0161kobrtnut\u00ed, k\u0159e\u010de v ruce a dal\u0161\u00ed nen\u00e1padn\u00e9 projevy jsou p\u0159\u00edznaky ob\u00e1van\u00e9ho onemocn\u011bn\u00ed centr\u00e1ln\u00edho nervov\u00e9ho […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":15785,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-40075","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\/40075","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=40075"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40075\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/15785"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40075"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40075"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40075"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}