{"id":30447,"date":"2018-05-03T18:37:21","date_gmt":"2018-05-03T16:37:21","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30447"},"modified":"2018-05-03T18:37:21","modified_gmt":"2018-05-03T16:37:21","slug":"zivot-s-ereskou-vetsina-pacientu-muze-plnohodnotne-zit","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30447","title":{"rendered":"\u017divot s „ereskou“. V\u011bt\u0161ina pacient\u016f m\u016f\u017ee plnohodnotn\u011b \u017e\u00edt"},"content":{"rendered":"

O roztrou\u0161en\u00e9 skler\u00f3ze se ka\u017edoro\u010dn\u011b dozv\u00ed asi tis\u00edc lid\u00ed ve v\u011bku od 20 do 40 let, z nich\u017e dv\u011b t\u0159etiny tvo\u0159\u00ed \u017eeny. P\u0159esto\u017ee se v\u00fdzkumu t\u00e9to neurodegenerativn\u00ed choroby v\u011bnuj\u00ed odborn\u00edci po stalet\u00ed, st\u00e1le kolem n\u00ed panuje \u0159ada m\u00fdt\u016f a nejasnost\u00ed. Dodnes nen\u00ed zn\u00e1m\u00e1 jej\u00ed p\u0159\u00ed\u010dina a nelze ji vyl\u00e9\u010dit. D\u00edky komplexn\u00ed modern\u00ed terapii v\u0161ak nemocn\u00fdm v\u00fdrazn\u011b stoupla \u0161ance pro\u017e\u00edt plnohodnotn\u00fd \u017eivot.<\/strong><\/p>\n

„Ereska“, jak zn\u00ed hovorov\u00e9 ozna\u010den\u00ed roztrou\u0161en\u00e9 skler\u00f3zy, je autoimunitn\u00ed onemocn\u011bn\u00ed. Imunitn\u00ed syst\u00e9m se obr\u00e1t\u00ed proti vlastn\u00edmu t\u011blu. Postihuje b\u00edlou hmotu v mozku a m\u00ed\u0161e, zp\u016fsobuje z\u00e1n\u011bt obal\u016f nervov\u00fdch vl\u00e1ken a z\u00e1nik \u010d\u00e1sti nervov\u00fdch bun\u011bk. Onemocn\u011bn\u00ed je l\u00e9\u010diteln\u00e9, ale \u00fabytek nervov\u00fdch vl\u00e1ken zastavit nelze. Diagn\u00f3zou u n\u00e1s trp\u00ed zhruba 20 tis\u00edc lid\u00ed.<\/p>\n

P\u0159esnou p\u0159\u00ed\u010dinu vzniku se dodnes nepoda\u0159ilo objasnit. Na jej\u00edm rozvoji, stejn\u011b jako u ostatn\u00edch autoimunitn\u00edch onemocn\u011bn\u00ed, se podle odborn\u00edk\u016f pravd\u011bpodobn\u011b pod\u00edl\u00ed n\u011bkolik faktor\u016f: nezn\u00e1m\u00fd virus zp\u016fsobuj\u00edc\u00ed infekci, nedostatek vitaminu D \u010di hormony. Riziko zvy\u0161uje rovn\u011b\u017e kou\u0159en\u00ed a zne\u010di\u0161t\u011bn\u00e9 \u017eivotn\u00ed prost\u0159ed\u00ed. V neposledn\u00ed \u0159ad\u011b m\u00e1 na rozvoji nemoci sv\u016fj pod\u00edl i d\u011bdi\u010dnost, a\u010dkoli \u010dty\u0159i z p\u011bti pacient\u016f nemoc v rodin\u011b nem\u011blo.<\/p>\n

P\u0158I PODEZ\u0158EN\u00cd NEOT\u00c1LEJTE A NAV\u0160TIVTE L\u00c9KA\u0158E<\/p>\n

Roztrou\u0161en\u00e1 skler\u00f3za se typicky projevuje n\u00e1hl\u00fdmi neurologick\u00fdmi pot\u00ed\u017eemi, zvan\u00fdmi t\u00e9\u017e ataky, kter\u00e9 trvaj\u00ed alespo\u0148 24 hodin.<\/p>\n

Mezi hlavn\u00ed symptomy, je\u017e jsou v\u0161ak velmi individu\u00e1ln\u00ed a mohou se v pr\u016fb\u011bhu choroby m\u011bnit, pat\u0159\u00ed zaml\u017een\u00e9 vid\u011bn\u00ed, hor\u0161\u00ed kontrast barev, bolest v oku, brn\u011bn\u00ed v kon\u010detin\u00e1ch, znecitliv\u011bn\u00ed, slabost, neobratnost, zakop\u00e1v\u00e1n\u00ed, porucha rovnov\u00e1hy, \u0159e\u010di i polyk\u00e1n\u00ed. \u010cast\u00fdmi p\u0159\u00edznaky jsou rovn\u011b\u017e \u00fanava, zhor\u0161en\u00e1 schopnost soust\u0159ed\u011bn\u00ed, zapom\u011btlivost \u010di v\u00fdkyvy n\u00e1lad.<\/p>\n

Diagnostikovat RS nen\u00ed v sou\u010dasn\u00e9 dob\u011b slo\u017eit\u00e9.<\/p>\n

Ji\u017e po prvn\u00ed atace ji dok\u00e1\u017ee odhalit magnetick\u00e1 rezonance. Krom\u011b n\u00ed se v \u010cR pou\u017e\u00edv\u00e1 k diagnostice tak\u00e9 lumb\u00e1ln\u00ed punkce neboli odb\u011br mozkom\u00ed\u0161n\u00edho moku vpichem z bedern\u00ed p\u00e1te\u0159e.<\/p>\n

L\u00e9\u010dba RS prob\u00edh\u00e1 ve t\u0159ech f\u00e1z\u00edch a jej\u00ed postup v\u017edy z\u00e1le\u017e\u00ed na konkr\u00e9tn\u00edch symptomech pacienta.<\/p>\n

Prvn\u00edm krokem je l\u00e9\u010dba akutn\u00edho z\u00e1n\u011btu, p\u0159i n\u00ed\u017e se pacient\u016fm pod\u00e1vaj\u00ed nitro\u017eiln\u011b nebo or\u00e1ln\u011b vysok\u00e9 d\u00e1vky kortikoid\u016f.<\/p>\n

Dojde-li k v\u00e1\u017en\u011bj\u0161\u00ed situaci, p\u0159istupuje se k odebr\u00e1n\u00ed \u0161kodliv\u00fdch l\u00e1tek z krevn\u00ed plazmy.<\/p>\n

Dlouhodob\u00e1 terapie spo\u010d\u00edv\u00e1 v u\u017e\u00edvan\u00ed l\u00e9k\u016f modifikuj\u00edc\u00edch pr\u016fb\u011bh choroby, kter\u00e9 postupn\u011b sn\u00ed\u017e\u00ed v\u00fdskyt atak a celkov\u011b zpomaluj\u00ed pr\u016fb\u011bh nemoci.<\/p>\n

L\u00e9\u010debn\u00fd pl\u00e1n tak\u00e9 dopl\u0148uje symptomatick\u00e1 l\u00e9\u010dba, je\u017e se soust\u0159ed\u00ed na individu\u00e1ln\u00ed p\u0159\u00edznaky. Doporu\u010duje se tak\u00e9 fyzioterapie, rehabilitace a dodr\u017eov\u00e1n\u00ed zdrav\u00e9 \u017eivotospr\u00e1vy. Vzhledem k psychick\u00e9 n\u00e1ro\u010dnosti onemocn\u011bn\u00ed doporu\u010duj\u00ed l\u00e9ka\u0159i i psychoterapeutickou podporu.<\/p>\n

NEBOJTE SE O SV\u00c9 NEMOCI MLUVIT<\/p>\n

Lid\u00e9 s RS nez\u0159\u00eddka sv\u00e9 zdravotn\u00ed probl\u00e9my p\u0159ed okol\u00edm taj\u00ed. Setk\u00e1vaj\u00ed se t\u0159eba s t\u00edm, \u017ee n\u011bkter\u00e9 m\u00edrn\u011bj\u0161\u00ed symptomy, nap\u0159\u00edklad \u00fanavu nebo zapom\u011btlivost, ostatn\u00ed bagatelizuj\u00ed. Je pot\u0159eba m\u00edt na pam\u011bti, \u017ee i pro bl\u00edzk\u00e9 okol\u00ed nemocn\u00e9ho je choroba nelehkou z\u00e1le\u017eitost\u00ed. Proto m\u016f\u017ee vhodn\u011b zvolen\u00e1 oboustrann\u00e1 komunikace pos\u00edlit nejen vz\u00e1jemn\u00e9 porozum\u011bn\u00ed, ale hlavn\u011b nemocn\u00e9ho v l\u00e9\u010db\u011b posunout d\u00e1l.<\/p>\n

Specifickou skupinou pro komunikaci z\u00e1va\u017en\u00fdch onemocn\u011bn\u00ed jsou d\u011bti, ale ani p\u0159ed nimi nemus\u00edte svou nemoc tajit nebo jim o sv\u00e9m stavu lh\u00e1t. Vhodnou pom\u016fckou pro rodi\u010de, kte\u0159\u00ed trp\u00ed v\u00e1\u017enou nemoc\u00ed, jsou nap\u0159\u00edklad komiksy Medikidz, kter\u00e9 vznikly ve spolupr\u00e1ci l\u00e9ka\u0159\u016f, a d\u011btsk\u00fdch psycholog\u016f. Srozumiteln\u00fd a z\u00e1rove\u0148 dobrodru\u017en\u011b lad\u011bn\u00fd popis pr\u016fb\u011bhu nemoci zprost\u0159edkovan\u00fd kreslen\u00fdmi superhrdiny vt\u00e1hne d\u011bti i v\u00e1s a z\u00e1rove\u0148 poslou\u017e\u00ed t\u0159eba jako za\u010d\u00e1tek otev\u0159en\u00e9 diskuse beze strachu a zbyte\u010dn\u00e9ho pesimismu.<\/p>\n

„Dce\u0159i je osm let, tak\u017ee je s moj\u00ed nemoc\u00ed sm\u00ed\u0159en\u00e1 odmala. Jak ale nemoc postupuje, tak\u00e9 ona vn\u00edm\u00e1, \u017ee n\u011bkter\u00e9 aktivity a sport mus\u00ed za\u017e\u00edvat jen s maminkou. Komiks Medikidz mi p\u0159ijde jako p\u011bkn\u00fd materi\u00e1l pro rodi\u010de d\u011bt\u00ed, kte\u0159\u00ed jsou nov\u011b diagnostikovan\u00ed a hledaj\u00ed vhodn\u00fd zp\u016fsob a slova, jak sv\u00e9mu d\u00edt\u011bti situaci vysv\u011btlit,“ \u0159\u00edk\u00e1 Michal Karsch, kter\u00fd s RS \u017eije 23 let.<\/p>\n

P\u0159esto\u017ee roztrou\u0161en\u00e1 skler\u00f3za vn\u00e1\u0161\u00ed do \u017eivota nemocn\u00fdch i jejich bl\u00edzk\u00fdch nep\u0159\u00edjemn\u00e9 situace a v\u00fdrazn\u011b ovliv\u0148uje ka\u017edodenn\u00ed \u017eivot, je pro zd\u00e1rnou l\u00e9\u010dbu i psychiku pacient\u016f d\u016fle\u017eit\u00e9 neztr\u00e1cet optimismus a neust\u00e1vat v obl\u00edben\u00fdch aktivit\u00e1ch.<\/p>\n

Sou\u010dasn\u00e9 vysp\u011bl\u00e9 metody l\u00e9\u010dby a vlastn\u00ed pozitivn\u00ed p\u0159\u00edstup dok\u00e1\u017eou z\u00e1zraky, tak\u017ee i s „ereskou“ se d\u00e1 pro\u017e\u00edt napln\u011bn\u00fd a \u0161\u0165astn\u00fd \u017eivot.<\/p>\n

—<\/p>\n

Rozhovor s odborn\u00edkem<\/p>\n

Roztrou\u0161en\u00e1 skler\u00f3za m\u016f\u017ee p\u0159ekvapit ka\u017ed\u00e9ho. D\u016fle\u017eit\u00e9 je ale p\u0159ij\u00edt v\u010das a za\u010d\u00edt svou situaci \u0159e\u0161it. D\u00edky revolu\u010dn\u00edmu pokroku v l\u00e9\u010db\u011b tak maj\u00ed pacienti s diagn\u00f3zou RS vy\u0161\u0161\u00ed \u0161anci pro\u017e\u00edt \u0161\u0165astn\u00fd \u017eivot bez v\u011bt\u0161\u00edch omezen\u00ed, co\u017e dokl\u00e1d\u00e1 MAREK PETERKA, vedouc\u00ed MS Centra p\u0159i Fakultn\u00ed nemocnici Plze\u0148.<\/p>\n

– Jak\u00e9 jsou typick\u00e9 p\u0159\u00edznaky nemoci a kde se m\u00e1m nechat vy\u0161et\u0159it, pokud m\u00e1m podez\u0159en\u00ed na RS?<\/p>\n

Mezi nej\u010dast\u011bj\u0161\u00ed po\u010d\u00e1te\u010dn\u00ed projevy RS pat\u0159\u00ed p\u0159\u00edznaky spojen\u00e9 se z\u00e1n\u011btem optick\u00e9ho nervu: zaml\u017een\u00e9 vid\u011bn\u00ed, bolest p\u0159i pohybem bulbu, v\u00fdpadky v zorn\u00e9m poli a porucha barevn\u00e9ho vid\u011bn\u00ed. K nej\u010dast\u011bj\u0161\u00edm p\u0159\u00edznak\u016fm v\u016fbec pat\u0159\u00ed poruchy citlivosti, a to jak ve smyslu sn\u00ed\u017een\u00e9ho, nebo i naopak zv\u00fd\u0161en\u00e9ho vn\u00edm\u00e1n\u00ed citlivosti. Dal\u0161\u00edmi typick\u00fdmi p\u0159\u00edznaky jsou tzv. centr\u00e1ln\u00ed poruchy hybnosti projevuj\u00edc\u00ed se slabost\u00ed \u010di neobratnost\u00ed kon\u010detiny. M\u00e9n\u011b \u010dast\u00fdmi p\u0159\u00edznaky jsou poruchy artikulace \u010di koordinace pohyb\u016f v r\u00e1mci posti\u017een\u00ed moze\u010dku, poruchy sv\u011bra\u010d\u016f a sexu\u00e1ln\u00edch funkc\u00ed. Podez\u0159en\u00ed na diagn\u00f3zu RS a jej\u00ed prim\u00e1rn\u00ed diagnostiku by m\u011bl zajistit ka\u017ed\u00fd specialista v oboru neurologie. V p\u0159\u00edpad\u011b atypick\u00e9ho klinick\u00e9ho pr\u016fb\u011bhu \u010di nejasn\u00e9ho z\u00e1v\u011bru po proveden\u00e9 prim\u00e1rn\u00ed diagnostice lze konzultovat specializovan\u00e1 centra pro l\u00e9\u010dbu RS. V t\u011bchto centrech po potvrzen\u00ed diagn\u00f3zy RS doch\u00e1z\u00ed k sezn\u00e1men\u00ed pacienta s chorobou a mo\u017enostmi l\u00e9\u010dby.<\/p>\n

– P\u0159ibli\u017ete, pros\u00edm, zp\u016fsob dne\u0161n\u00ed l\u00e9\u010dby RS a jak se zm\u011bnila oproti dob\u011b p\u0159ed deseti, dvaceti lety?<\/p>\n

Jak jsem ji\u017e nazna\u010dil, l\u00e9\u010dba je organizov\u00e1na a vedena ve specializovan\u00fdch centrech pro RS, kter\u00fdch je v \u010cR aktu\u00e1ln\u011b 15. V t\u011bchto centrech jsou koncentrov\u00e1ni odborn\u00edci na tuto problematiku, a to jak z \u0159ad l\u00e9ka\u0159\u016f, tak sester, ale tak\u00e9 fyzioterapeut\u016f, klinick\u00fdch psycholog\u016f a ergoterapeut\u016f. Zde se tedy zahajuje terapie l\u00e9ky ze skupiny ovliv\u0148uj\u00edc\u00edch pr\u016fb\u011bh onemocn\u011bn\u00ed (DMD \u2013 disease modifying drugs) a n\u00e1sledn\u011b se prov\u00e1d\u00ed monitoring \u00fa\u010dinnosti l\u00e9\u010dby a v\u00fdskytu ne\u017e\u00e1douc\u00edch \u00fa\u010dink\u016f. V posledn\u00edch dvou desetilet\u00edch prod\u011blala l\u00e9\u010dba, ale i vlastn\u00ed pohled na strategii a c\u00edle l\u00e9\u010dby RS, revolu\u010dn\u00ed pokrok. Nyn\u00ed m\u00e1me k dispozici v\u00edce ne\u017e deset l\u00e9k\u016f ze skupiny DMD, co\u017e n\u00e1m umo\u017e\u0148uje hledat a ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f tak\u00e9 naj\u00edt optim\u00e1ln\u00ed terapii pro dan\u00e9ho pacienta. Nejv\u011bt\u0161\u00edm probl\u00e9mem pln\u00e9ho vyu\u017eit\u00ed cel\u00e9ho spektra t\u011bchto l\u00e9k\u016f jsou dlouhodob\u00e9 restrikce a perzekuce ze strany pl\u00e1tc\u016f zdravotn\u00ed p\u00e9\u010de.<\/p>\n

– Jak vysok\u00e9 jsou \u0161ance pro \u010dlov\u011bka, kter\u00e9mu je p\u0159i zji\u0161t\u011bn\u00ed nemoci t\u0159eba 25 let a bude d\u016fsledn\u011b podstupovat l\u00e9\u010dbu, \u017ee se do\u017eije vysok\u00e9ho v\u011bku a bude \u017e\u00edt bez v\u011bt\u0161\u00edch omezen\u00ed?<\/p>\n

L\u00e9\u010dba roztrou\u0161en\u00e9 skler\u00f3zy opravdu v\u00fdrazn\u011b pokro\u010dila. D\u0159\u00edve doch\u00e1zelo k ne\u00faprosn\u00e9 invalidizaci pacient\u016f s postupnou ztr\u00e1tou samostatn\u00e9 ch\u016fze a\u017e po neschopnost ch\u016fze i b\u011bhem n\u011bkolika let. Nyn\u00ed m\u016f\u017eeme \u0159\u00edci, \u017ee s vysoce \u00fa\u010dinn\u00fdmi l\u00e9ky doch\u00e1z\u00ed k v\u00fdzrazn\u00e9mu zpomalen\u00ed progrese onemocn\u011bn\u00ed \u010di dokonce dlouhodob\u00e9 remisi nemoci. Pouze u mal\u00e9 \u010d\u00e1sti pacient\u016f doch\u00e1z\u00ed k progresi onemocn\u011bn\u00ed i p\u0159es pou\u017eit\u00ed nej\u00fa\u010dinn\u011bj\u0161\u00ed terapie. M\u016f\u017eeme tedy \u0159\u00edci, \u017ee v\u011bt\u0161ina pacient\u016f se do\u017eije vysok\u00e9ho v\u011bku a nemal\u00e1 \u010d\u00e1st z nich ani po dlouholet\u00e9m pr\u016fb\u011bhu onemocn\u011bn\u00ed nedos\u00e1hne v\u011bt\u0161\u00ed invalidity.<\/p>\n

Info
\nKde hledat informace a pomoc<\/p>\n

– Unie Roska \u2013 spolek na podporu pacient\u016f s RS
\n– Sdru\u017een\u00ed mlad\u00fdch sklerotik\u016f (SMS) \u2013 pacientsk\u00e1 organizace zam\u011b\u0159en\u00e1 p\u0159edev\u0161\u00edm na nov\u011b diagnostikovan\u00e9, mlad\u00e9 pacienty
\n– Aktivn\u00ed \u017eivot \u2013 Informace o RS, zaj\u00edmav\u00e9 tipy a aktuality o nemoci, seznam RS center a neziskov\u00fdch organizac\u00ed
\n– Ereska aktivn\u011b \u2013 tipy, jak zvl\u00e1dnout ka\u017edodenn\u00ed \u017eivot s RS, poradna l\u00e9ka\u0159e
\n– RS Kompas \u2013 pr\u016fvodce pacient\u016f s RS, tipy, jak s nemoc\u00ed aktivn\u011b \u017e\u00edt a bojovat
\n– ReMuS (Register Multiple Sclerosis) \u2013 celost\u00e1tn\u00ed registr pacient\u016f s RS mapuje re\u00e1lnou situaci onemocn\u011bn\u00ed v \u010cR
\n– Seznam specializovan\u00fdch RS center po cel\u00e9 \u010cR \u2013 www.aktivnizivot.cz\/ zivot-s-rs\/seznam-rscenter\/<\/p>\n

DENIS DRAHO\u0160
\n\u010ceskobud\u011bjovick\u00fd den\u00edk
\nhttp:\/\/ceskobudejovicky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

O roztrou\u0161en\u00e9 skler\u00f3ze se ka\u017edoro\u010dn\u011b dozv\u00ed asi tis\u00edc lid\u00ed ve v\u011bku od 20 do 40 let, z nich\u017e dv\u011b t\u0159etiny tvo\u0159\u00ed \u017eeny. P\u0159esto\u017ee se v\u00fdzkumu […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14367,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-30447","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30447","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=30447"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30447\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14367"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30447"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30447"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30447"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}