{"id":24280,"date":"2017-04-03T10:33:31","date_gmt":"2017-04-03T08:33:31","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=24280"},"modified":"2017-04-03T16:38:14","modified_gmt":"2017-04-03T14:38:14","slug":"lide-s-roztrousenou-sklerozou-tezko-hledaji-praci-pro-zamestnavatele-jsou-pritom-prinosem-2","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=24280","title":{"rendered":"Lid\u00e9 s roztrou\u0161enou skler\u00f3zou t\u011b\u017eko hledaj\u00ed pr\u00e1ci. Pro zam\u011bstnavatele jsou p\u0159itom p\u0159\u00ednosem"},"content":{"rendered":"

\u201eM\u00e1m roztrou\u0161enou skler\u00f3zu\u201c, t\u0159i jednoduch\u00e1 slova, kter\u00e1 ale v\u011bt\u0161ina firem od sv\u00fdch zam\u011bstnanc\u016f nikdy nezaslechne. D\u016fvodem b\u00fdv\u00e1 strach ze ztr\u00e1ty pr\u00e1ce, obava z p\u0159edpojatosti budouc\u00edch zam\u011bstnavatel\u016f, odm\u00edtnut\u00ed koleg\u016f, i to, \u017ee se \u0159ada lid\u00ed s diagn\u00f3zou dosud nesm\u00ed\u0159ila. Nemoc se t\u00fdk\u00e1 v\u011bt\u0161inou mlad\u00fdch lid\u00ed v produktivn\u00edm v\u011bku, tedy mezi 30 a 40 lety.<\/strong>
\n
\n\u201e\u017dila jsem hekticky, v pr\u00e1ci se c\u00edtila nepostradateln\u00e1. Kdy\u017e m\u011b p\u0159ekvapila nemoc, v\u0161e se zm\u011bnilo. P\u0159esto\u017ee jsem ve firm\u011b pracovala 3 roky, po p\u0159izn\u00e1n\u00ed diagn\u00f3zy se atmosf\u00e9ra zm\u011bnila k hor\u0161\u00edmu. Nakonec jsem ode\u0161la,\u201c vzpom\u00edn\u00e1 pacientka s roztrou\u0161enou skler\u00f3zou (RS) Hana Navr\u00e1tilov\u00e1. V up\u0159\u00edmnosti v\u0161ak nepolevila a o nemoci otev\u0159en\u011b hovo\u0159ila nad\u00e1le. \u201eVyplatilo se mi to. Na\u0161la jsem m\u00edsto ve firm\u011b, kde jsem z\u016fstala dal\u0161\u00edch 18 let, nikdo nem\u011bl s nemoc\u00ed probl\u00e9m. V\u011bd\u011bli, \u017ee kdy\u017e budu n\u011bkolik dn\u00ed ze zdravotn\u00edch d\u016fvod\u016f chyb\u011bt, v dal\u0161\u00edch dnech to zase do\u017eenu. Pracovala jsem st\u00e1le na pln\u00fd \u00favazek,\u201c dopl\u0148uje Hana Navr\u00e1tilov\u00e1, kter\u00e1 st\u00e1la u zrodu Nada\u010dn\u00edho fondu IMPULS, jen\u017e podporuje pacienty s RS a provozuje Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou ReMuS. Podle n\u00ed lid\u00e9 s RS pln\u00ed sv\u00e9 pracovn\u00ed povinnosti velmi pe\u010dliv\u011b, pracuj\u00ed na 100%, aby zam\u011bstnavateli dok\u00e1zali, \u017ee v\u0161e zvl\u00e1dnou.<\/p>\n

Proto\u017ee pacienti s RS vypadaj\u00ed zcela zdrav\u011b, nen\u00ed pro n\u011b t\u011b\u017ek\u00e9 nemoc p\u0159ed zam\u011bstnavatelem tajit. \u201ePro tuto nemoc je typick\u00e9 st\u0159\u00edd\u00e1n\u00ed obdob\u00ed z\u00e1chvat\u016f (atak) a obdob\u00ed zd\u00e1nliv\u00e9ho klidu. Toto st\u0159\u00edd\u00e1n\u00ed nelze p\u0159esn\u011b p\u0159edpov\u00eddat. Lid\u00e9 \u010dasto trp\u00ed zv\u00fd\u0161enou \u00fanavou,\u201c popisuje nemoc doc. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D. z Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed 1. LF UK a VFN v Praze.<\/p>\n

\u201eV na\u0161em Centru pro l\u00e9\u010dbu RS je registrov\u00e1no p\u0159es 1000 pacient\u016f. V\u011bt\u0161ina svoji nemoc p\u0159ed zam\u011bstnavatelem nep\u0159izn\u00e1 z obavy, \u017ee pracovn\u00ed m\u00edsto v\u016fbec nez\u00edsk\u00e1. Pokud ji\u017e zam\u011bstn\u00e1ni jsou, ob\u00e1vaj\u00ed se, \u017ee na n\u011b bude kv\u016fli tomuto sd\u011blen\u00ed nahl\u00ed\u017eeno jinak. V p\u0159\u00edpad\u011b, \u017ee se lid\u00e9 za\u010dnou pot\u00fdkat se zdravotn\u00edmi probl\u00e9my, \u010dasto se sna\u017e\u00ed p\u0159ej\u00edt na zkr\u00e1cen\u00fd \u00favazek. K tomu ale nejsou zam\u011bstnavatel\u00e9 p\u0159\u00edli\u0161 vst\u0159\u00edcn\u00ed. Na\u0161e poradenstv\u00ed zahrnuje i to, zda o sv\u00e9 nemoci zam\u011bstnavateli \u0159\u00edci a p\u0159\u00edpadn\u011b jak. Zm\u011bnu zdravotn\u00edho stavu v\u010detn\u011b p\u0159iznan\u00e9 invalidity pacienti v\u011bt\u0161inou sd\u011bluj\u00ed a\u017e ve chv\u00edli, kdy jejich zam\u011bstn\u00e1v\u00e1n\u00ed m\u016f\u017ee firm\u011b p\u0159in\u00e1\u0161et v\u00fdhodu – slevu na dani a\u017e do v\u00fd\u0161e 60 000 korun,\u201c popisuje Mgr. Lucie Valouchov\u00e1, kter\u00e1 zaji\u0161\u0165uje soci\u00e1ln\u00ed poradenstv\u00ed zdravotn\u011b znev\u00fdhodn\u011bn\u00fdm pacient\u016fm ve FN Plze\u0148.
\n\u201eZe sv\u00e9 praxe si vybavuji mladou sle\u010dnu s RS, kter\u00e1 p\u0159ech\u00e1zela vir\u00f3zy bez \u010derp\u00e1n\u00ed pracovn\u00ed neschopnosti a sna\u017eila se pod\u00e1vat stejn\u00e9 v\u00fdkony jako ostatn\u00ed zam\u011bstnanci. Zp\u016fsobila si t\u00edm bohu\u017eel jen prud\u0161\u00ed postup nemoci s \u010dast\u011bj\u0161\u00edmi atakami.\u201c<\/p>\n

Podle slov sv\u00e9 \u0159editelky Hany Potm\u011b\u0161ilov\u00e9 m\u00e1 Nada\u010dn\u00ed fond pro podporu zam\u011bstn\u00e1v\u00e1n\u00ed osob se zdravotn\u00edm posti\u017een\u00edm (NFOZP) s prac\u00ed lid\u00ed s RS r\u016fzn\u00e9 zku\u0161enosti dle typu firmy. \u201eV mal\u00fdch firm\u00e1ch rodinn\u00e9ho typu, nen\u00ed obvykle \u017e\u00e1dn\u00fd probl\u00e9m, pacienti se neboj\u00ed p\u0159iznat nemoc sv\u00e9mu okol\u00ed, a to je p\u0159ij\u00edm\u00e1.\u201c Naopak nejhor\u0161\u00edm p\u0159\u00edkladem jsou podle n\u00ed st\u00e1tn\u00ed spr\u00e1va a samospr\u00e1va, p\u0159esto\u017ee pr\u00e1v\u011b tento segment by m\u011bl j\u00edt ostatn\u00edm p\u0159\u00edkladem.<\/p>\n

\u201eLid\u00e9, kte\u0159\u00ed v t\u00e9to oblasti pracuj\u00ed, se st\u00e1vaj\u00ed ter\u010dem \u0161ikany, a proto nemoc nep\u0159iznaj\u00ed a p\u0159\u00edpadn\u00e9 zdravotn\u00ed probl\u00e9my sv\u00e1d\u011bj\u00ed na \u201espole\u010densky p\u0159ij\u00edman\u011bj\u0161\u00ed\u201c boreli\u00f3zu \u010di chronick\u00e9 bolesti zad. St\u00e1tn\u00ed spr\u00e1va v\u011bt\u0161inou nepln\u00ed st\u00e1tem dan\u00e9 kv\u00f3ty, podle nich\u017e mus\u00ed ka\u017ed\u00e1 firma nad 25 zam\u011bstnanc\u016f d\u00e1t pr\u00e1ci 4 % lid\u00ed se zdravotn\u00edm posti\u017een\u00edm. Pokud tak neu\u010din\u00ed, odv\u00e1d\u00ed do st\u00e1tn\u00edho rozpo\u010dtu za ka\u017ed\u00e9ho chyb\u011bj\u00edc\u00edho zam\u011bstnance s posti\u017een\u00edm cca 70 000 korun, nebo v\u0161e kompenzuje n\u00e1hradn\u00edm pln\u011bn\u00edm nap\u0159\u00edklad v podob\u011b n\u00e1kupu v\u00fdrobk\u016f z tzv. chr\u00e1n\u011bn\u00fdch d\u00edlen,\u201c dopl\u0148uje Potm\u011b\u0161ilov\u00e1. U nadn\u00e1rodn\u00edch firem z\u00e1le\u017e\u00ed podle jejich slov na tom, jak dbaj\u00ed na etick\u00e9 kodexy, zda maj\u00ed nastavenou spole\u010denskou odpov\u011bdnost firem. Pokud ano, pak se k zam\u011bstnanc\u016fm chovaj\u00ed vst\u0159\u00edcn\u011b. \u201ePo\u010det takov\u00fdch osv\u00edcen\u00fdch zam\u011bstnavatel\u016f lze spo\u010d\u00edtat na prstech dvou rukou,\u201c uzav\u00edr\u00e1 Potm\u011b\u0161ilov\u00e1.<\/p>\n

\u0158e\u0161en\u00ed vid\u00ed v tvrd\u0161\u00edm p\u0159\u00edstupu st\u00e1tu k firm\u00e1m. \u201eSt\u00e1t by m\u011bl zru\u0161it n\u00e1hradn\u00ed pln\u011bn\u00ed a trvat na tom, aby firmy znev\u00fdhodn\u011bn\u00fdm jedinc\u016fm umo\u017enily pracovat,\u201c \u0159\u00edk\u00e1 Potm\u011b\u0161ilov\u00e1 a shoduje se v tom s p\u0159edn\u00ed \u010deskou neurolo\u017ekou, profesorkou Evou Havrdovou. \u201eZam\u011bstnavatel\u016fm bych vzk\u00e1zala, a\u0165 se neboj\u00ed d\u00e1vat pr\u00e1ci lidem s RS. Jejich personalist\u00e9 by m\u011bli poznat, zda tento \u010dlov\u011bk o pr\u00e1ci stoj\u00ed a m\u00e1 pot\u0159ebnou kvalifikaci. Pokud ano, bude cenn\u00fdm p\u0159\u00ednosem pro firmu,\u201c dopl\u0148uje prof. MUDr. Eva Havrdov\u00e1, CSc., vedouc\u00ed MS Centra Neurologick\u00e9 kliniky 1. LF UK a VFN v Praze.<\/p>\n

Podle prof. Havrdov\u00e9 ukazuj\u00ed data ze zahrani\u010dn\u00edch registr\u016f a klinick\u00fdch studi\u00ed, \u017ee modern\u00ed, biologick\u00e9 l\u00e9ky um\u00ed nemoc u velk\u00e9 \u010d\u00e1sti pacient\u016f stabilizovat, odd\u00e1lit invaliditu a p\u0159i v\u010dasn\u00e9m nasazen\u00ed prodlou\u017eit obdob\u00ed pr\u00e1ceschopnosti. Tato l\u00e9\u010dba dok\u00e1\u017ee sn\u00ed\u017eit \u00fanavu a po\u010det dn\u00ed, kter\u00e9 si mus\u00ed vyb\u00edrat pacient jako pracovn\u00ed volno, kles\u00e1. Lid\u00e9 s RS se ale p\u0159edev\u0161\u00edm nesm\u00ed b\u00e1t o sv\u00e9 nemoci mluvit. \u201eEfekt l\u00e9\u010dby hodnot\u00edme pr\u00e1v\u011b podle schopnosti jedince pracovat \u2013 je to jeden ze z\u00e1kladn\u00edch parametr\u016f, kter\u00fd sledujeme,\u201c uvedla profesorka Havrdov\u00e1.<\/p>\n

Negativn\u00ed zku\u0161enosti se zam\u011bstn\u00e1n\u00edm m\u00e1 produk\u010dn\u00ed Hana Ulmanov\u00e1 \u201eLid\u00e9 v pr\u00e1ci si mysleli, \u017ee jsem l\u00edn\u00e1 a simuluji. Kv\u016fli nemoci jsem se pot\u00fdkala s \u00fanavou. P\u0159esto\u017ee jsem \u0159\u00edkala, \u017ee jsem nemocn\u00e1, nap\u011bt\u00ed v pr\u00e1ci p\u0159etrv\u00e1valo, a\u017e jsem dala v\u00fdpov\u011b\u010f sama. Od t\u00e9 doby jsem pracovala na \u017eivnostensk\u00fd list, abych se nemusela nikomu zpov\u00eddat,\u201c mluv\u00ed o sv\u00fdch z\u00e1\u017eitc\u00edch Hana Ulmanov\u00e1.<\/p>\n

RS taj\u00ed Marta z Prahy. Po p\u016flro\u010dn\u00edm cestov\u00e1n\u00ed po sv\u011bt\u011b za\u010dala hledat pr\u00e1ci. \u201eZ\u00edskala jsem certifik\u00e1t da\u0148ov\u00e9ho specialisty. Cht\u011bla jsem kv\u016fli nemoci pr\u00e1ci na zkr\u00e1cen\u00fd \u00favazek, denn\u011b jsem 4 hodiny tr\u00e1vila jej\u00edm intenzivn\u00edm hled\u00e1n\u00edm. Obe\u0161la jsem des\u00edtky firem, n\u011bkter\u00e9 zahrani\u010dn\u00ed. Na zkr\u00e1cen\u00fd \u00favazek mne necht\u011bl vz\u00edt nikdo. Rezignovala jsem a pracuji na cel\u00fd \u00favazek v men\u0161\u00ed poradensk\u00e9 firm\u011b. M\u016fj zam\u011bstnavatel o nemoci nev\u00ed,\u201c p\u0159izn\u00e1v\u00e1.<\/p>\n

Z dat z \u010desk\u00e9ho registru ReMuS, kter\u00fd dosud shrom\u00e1\u017edil data o 7 099 pacient\u016f z celkem 13 specializovan\u00fdch RS center, vypl\u00fdv\u00e1, \u017ee v\u00edce ne\u017e polovina pacient\u016f pracuje na pln\u00fd \u00favazek (54,8 %) a dal\u0161\u00edch 13,0 % na \u010d\u00e1ste\u010dn\u00fd \u00favazek, tedy \u017ee t\u00e9m\u011b\u0159 68% je pr\u00e1ceschopn\u00fdch. V\u011bt\u0161ina sledovan\u00fdch (53,8%) nepob\u00edr\u00e1 \u017e\u00e1dn\u00e9 soci\u00e1ln\u00ed d\u00e1vky.<\/p>\n

\u201eChyb\u00ed tady siln\u00e1 pacientsk\u00e1 organizace, slo\u017een\u00e1 z pacient\u016f, p\u0159\u00edbuzn\u00fdch a zn\u00e1m\u00fdch, kter\u00e1 by bojovala za pr\u00e1va lid\u00ed s RS. Nikdo jin\u00fd toti\u017e nepom\u016f\u017ee. Pacienti si mus\u00ed uv\u011bdomit, \u017ee pokud se neza\u010dnou sami anga\u017eovat, sd\u00edlet svoje pracovn\u00ed zku\u0161enosti dobr\u00e9 i \u0161patn\u00e9 s ostatn\u00edmi, bojovat proti diskriminaci, a zasazovat se o to, aby je pracovn\u00ed trh p\u0159ijal, tak to nikdo jin\u00fd za n\u011b neud\u011bl\u00e1,\u201c \u0159\u00edk\u00e1 doc. MUDr. Dana Hor\u00e1kov\u00e1, Ph.D. z Centra pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed 1. LF UK a VFN v Praze.<\/p>\n

Pacienti nyn\u00ed netrp\u011bliv\u011b \u010dekaj\u00ed na p\u0159ipravovanou novelu z\u00e1kona o zam\u011bstnanosti, kter\u00e1 srovn\u00e1 minim\u00e1ln\u00ed mzdu u zdrav\u00fdch jedinc\u016f s t\u011bmi posti\u017een\u00fdmi \u2013 dosud se li\u0161ila a to je jedn\u00edm z d\u016fvod\u016f, pro\u010d pacienti svoji nemoc taj\u00ed.<\/p>\n

O projektu ReMuS<\/p>\n

Celost\u00e1tn\u00ed registr pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS) shroma\u017e\u010fuje od roku 2013 data o v\u00fdvoji nemoci, \u00fa\u010dinc\u00edch konkr\u00e9tn\u00edch l\u00e9k\u016f a bezpe\u010dnosti dlouhodob\u00e9 l\u00e9\u010dby \u2013 v sou\u010dasnosti je do n\u011bj zapojeno 13 z celkem 15 center specializovan\u00fdch na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed 7 099 z celkem 17 000 pacient\u016f. Organiz\u00e1torem je Nada\u010dn\u00ed fond IMPULS, kter\u00fd tento registr financuje z dar\u016f. Odborn\u00fdm garantem registru je Sekce neuroimunologie a likvorologie (SNIL) \u010cesk\u00e9 neurologick\u00e9 spole\u010dnosti \u010cLS JEP. Jednotliv\u00e9 zpr\u00e1vy z registru lze dohledat na str\u00e1nk\u00e1ch www.multiplesclerosis.cz.<\/p>\n

O roztrou\u0161en\u00e9 skler\u00f3ze<\/p>\n

Roztrou\u0161en\u00e1 skler\u00f3za 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\u00e1ma. 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. V sou\u010dasn\u00e9 dob\u011b v tuzemsku podstupuje biologickou l\u00e9\u010dbu p\u0159ibli\u017en\u011b 9 000 nemocn\u00fdch s RS.
\nNa cel\u00e9m sv\u011bt\u011b RS trp\u00ed 2,5 mili\u00f3n\u016f nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 17 tis\u00edc. Nemoc se vyskytuje hlavn\u011b 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, kou\u0159en\u00ed a nedostatek vitaminu D. Informace o roztrou\u0161en\u00e9 skler\u00f3ze lze nal\u00e9zt i na port\u00e1le www.rskompas.cz.<\/p>\n

Mark\u00e9ta Pudilov\u00e1
\nTiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201eM\u00e1m roztrou\u0161enou skler\u00f3zu\u201c, t\u0159i jednoduch\u00e1 slova, kter\u00e1 ale v\u011bt\u0161ina firem od sv\u00fdch zam\u011bstnanc\u016f nikdy nezaslechne. D\u016fvodem b\u00fdv\u00e1 strach ze ztr\u00e1ty pr\u00e1ce, obava z p\u0159edpojatosti budouc\u00edch […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":4884,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-24280","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\/24280","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=24280"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24280\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/4884"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24280"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24280"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24280"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}