{"id":28223,"date":"2017-05-16T11:18:52","date_gmt":"2017-05-16T09:18:52","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=28223"},"modified":"2017-05-16T11:18:52","modified_gmt":"2017-05-16T09:18:52","slug":"roztrousena-skleroza-zasahuje-psychiku-cele-rodiny","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=28223","title":{"rendered":"Roztrou\u0161en\u00e1 skler\u00f3za zasahuje psychiku cel\u00e9 rodiny"},"content":{"rendered":"

Poruchy n\u00e1lad, p\u0159ecitliv\u011blost, popudlivost, apatie. Probl\u00e9my s vyjad\u0159ov\u00e1n\u00edm emoc\u00ed a sebekontrolou, deprese \u010di my\u0161lenky na sebevra\u017edu \u2013 to jsou stavy a \u010dasto p\u0159ehl\u00ed\u017een\u00e9 projevy roztrou\u0161en\u00e9 skler\u00f3zy (RS). \u010celit jim mus\u00ed nejen pacient, ale i jeho bl\u00edzc\u00ed nebo zam\u011bstnavatel.<\/strong>
\n
\nL\u00e9ka\u0159i odhaduj\u00ed, \u017ee v \u010cR trp\u00ed v d\u016fsledku nemoci psychick\u00fdmi probl\u00e9my a\u017e 50 % lid\u00ed s RS. P\u0159esto na odbornou psychoterapeutickou p\u00e9\u010di poji\u0161\u0165ovny t\u00e9m\u011b\u0159 nep\u0159isp\u00edvaj\u00ed. Nemocn\u00e9 s RS v \u010cesku mapuje Registr pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS) a upozor\u0148uje na ni v r\u00e1mci Sv\u011btov\u00e9ho dne RS, kter\u00fd letos p\u0159ipad\u00e1 na 31. kv\u011btna.<\/p>\n

K psychick\u00fdm probl\u00e9m\u016fm u RS p\u0159isp\u00edv\u00e1 jak samotn\u00fd z\u00e1n\u011bt v mozku, tak t\u011b\u017ek\u00e1 \u017eivotn\u00ed situace pacienta. \u201eJednak m\u016f\u017ee j\u00edt o poruchy n\u00e1lad \u010di deprese, ale tak\u00e9 poruchy pam\u011bti, pozornosti \u010di koncentrace. Tyto kognitivn\u00ed probl\u00e9my dok\u00e1\u017eeme v\u00fdrazn\u011b zlep\u0161it pomoc\u00ed modern\u00edch l\u00e9k\u016f. Deprese a poruchy n\u00e1lad jsou \u0159e\u0161iteln\u00e9 farmaky jen z \u010d\u00e1sti, pro dlouhodob\u00fd efekt je nezbytn\u00e1 kvalitn\u00ed psychoterapie,\u201c \u0159\u00edk\u00e1 prof. Eva Havrdov\u00e1, vedouc\u00ed nejv\u011bt\u0161\u00edho \u010desk\u00e9ho RS centra p\u0159i V\u0161eobecn\u00e9 fakultn\u00ed nemocnici v Praze.<\/p>\n

I p\u0159esto, \u017ee si nemoc pacient s\u00e1m nezap\u0159\u00ed\u010dinil, ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f nehrad\u00ed tuto p\u00e9\u010di poji\u0161\u0165ovny. \u201e\u010casto proto doch\u00e1z\u00ed k p\u0159ehl\u00ed\u017een\u00ed t\u011bchto symptom\u016f nemoci, pacient trp\u00ed psychicky a nem\u016f\u017ee dob\u0159e spolupracovat p\u0159i l\u00e9\u010db\u011b. Kombinace psychoterapie s fyzioterapi\u00ed a adekv\u00e1tn\u00ed l\u00e9\u010dbou p\u0159itom obvykle zp\u016fsob\u00ed v\u00fdrazn\u00e9 zlep\u0161en\u00ed zdravotn\u00edho stavu, a t\u00edm i celkov\u00e9 kvality \u017eivota nemocn\u00e9ho,\u201c dod\u00e1v\u00e1 prof. Havrdov\u00e1.<\/p>\n

Jakmile se \u010dlov\u011bk dozv\u00ed diagn\u00f3zu RS, trv\u00e1 a\u017e n\u011bkolik m\u011bs\u00edc\u016f, ne\u017e ji p\u0159ijme a nau\u010d\u00ed se s n\u00ed \u017e\u00edt on i jeho bl\u00edzc\u00ed. \u201eNemocn\u00e9ho prov\u00e1z\u00ed strach z odm\u00edtnut\u00ed, pocit, \u017ee se pro rodinu st\u00e1v\u00e1 necht\u011bn\u00fdm b\u0159emenem, a my\u0161lenky, \u017ee \u017eivot nem\u00e1 smysl. \u010casto se uzav\u00edr\u00e1 p\u0159ed sv\u011btem,\u201c \u0159\u00edk\u00e1 Mgr. Jana Tomanov\u00e1, psycholo\u017eka specializuj\u00edc\u00ed se na l\u00e9\u010dbu pacient\u016f s RS. P\u0159ijet\u00ed nemoci v rodin\u011b naopak pom\u00e1h\u00e1 komunika\u010dn\u00ed otev\u0159enost. \u201eD\u016fle\u017eit\u00e1 je i jej\u00ed spr\u00e1vn\u00e1 m\u00edra a na\u010dasov\u00e1n\u00ed. O sv\u00fdch obav\u00e1ch maj\u00ed mluvit jak pacienti, tak zdrav\u00ed bl\u00edzc\u00ed. V\u0161ichni mus\u00ed p\u0159ipustit, \u017ee se jich diagn\u00f3za t\u00fdk\u00e1 a je z\u00e1sahem do chodu rodiny i partnersk\u00fdch vztah\u016f,\u201c dod\u00e1v\u00e1 psycholo\u017eka.<\/p>\n

Takovou zku\u0161enost m\u00e1 i pan\u00ed Helena (54), pro kterou byla nedostate\u010dn\u00e1 podpora man\u017eela v nemoci posledn\u00ed kapka, je\u017e zap\u0159\u00ed\u010dinila rozpad jej\u00edho man\u017eelstv\u00ed. \u201eM\u016fj mu\u017e se zaob\u00edral sp\u00ed\u0161e sv\u00fdmi probl\u00e9my a za cel\u00e9 roky se t\u00e9m\u011b\u0159 nestalo, \u017ee by ho m\u00e1 nemoc n\u011bjak intenzivn\u011b zaj\u00edmala \u010di ji pro\u017e\u00edval se mnou. A to i p\u0159esto, \u017ee jsem o jeho podporu st\u00e1la a nazna\u010dovala jsem mu to. Mo\u017en\u00e1 se ale m\u00e9 diagn\u00f3zy b\u00e1l,\u201c konstatuje Helena. Podle Jany Tomanov\u00e9 vyvol\u00e1v\u00e1 nejv\u011bt\u0161\u00ed konflikty v rodin\u011b to, pokud pacient s RS ut\u00edk\u00e1 do nemoci, vymlouv\u00e1 se na ni anebo naopak \u2013 pokud nemoc pop\u00edr\u00e1 a zneva\u017euje. \u201eN\u011bkdy takov\u00e9 chov\u00e1n\u00ed m\u016f\u017ee ve zdrav\u00e9m \u010dlov\u011bku vyvolat pot\u0159ebu \u00faniku,\u201c uzav\u00edr\u00e1 psycholo\u017eka.<\/p>\n

O RS je st\u00e1le co objevovat. \u201eKl\u00ed\u010dov\u00fd v\u00fdznam pro dal\u0161\u00ed pozn\u00e1n\u00ed nemoci a zlep\u0161en\u00ed ve\u0161ker\u00e9 p\u00e9\u010de maj\u00ed informace z re\u00e1ln\u00e9 klinick\u00e9 praxe. Ty n\u00e1m poskytuje pr\u00e1v\u011b registr,\u201c uv\u00e1d\u00ed odborn\u00e1 garantka registru ReMuS doc. Dana Hor\u00e1kov\u00e1 a dod\u00e1v\u00e1: \u201eD\u00edky ReMuSu se zapojujeme do mezin\u00e1rodn\u00edch v\u00fdzkumn\u00fdch projekt\u016f a v\u00fdrazn\u011b se posouv\u00e1me v pozn\u00e1n\u00ed nemoci.\u201c Letos poprv\u00e9 p\u0159in\u00e1\u0161\u00ed registr cenn\u00e1 data ze v\u0161ech 15 RS center v \u010cR, kter\u00e1 zaji\u0161tuj\u00ed p\u0159edev\u0161\u00edm p\u00e9\u010di o pacienty v \u010dasn\u00e9, atakovit\u00e9 f\u00e1zi RS, kte\u0159\u00ed jsou l\u00e9\u010den\u00ed n\u00e1kladnou biologickou l\u00e9\u010dbou. T\u011bch je k 31. 12. 2016 v registru 9 044.<\/p>\n

Zhruba 40 % v\u0161ech pacient\u016f s RS v\u0161ak tvo\u0159\u00ed pacienti v progresivn\u00ed f\u00e1zi nemoci. Data o nich zat\u00edm v \u010cR zcela chyb\u00ed, nen\u00ed zn\u00e1mo, kolik m\u00e1me takov\u00fdch pacient\u016f, jak\u00fd maj\u00ed stupe\u0148 posti\u017een\u00ed ani jak byli doposud l\u00e9\u010deni. \u201eNov\u011b se n\u00e1m v registru poda\u0159ilo z\u00edskat tak\u00e9 pr\u016flomov\u00e1 data o 1 955 \u201eprogresivn\u00edch\u201c pacientech. V t\u00e9to f\u00e1zi nemoci bohu\u017eel sou\u010dasn\u00e1 modern\u00ed terapie nezab\u00edr\u00e1. Tito pacienti tak st\u00e1le na sv\u00e9 l\u00e9ky \u010dekaj\u00ed. Odhadem jich je v \u010cR 5 a\u017e 7 tis\u00edc,\u201c uv\u00e1d\u00ed doc. Hor\u00e1kov\u00e1.<\/p>\n

Podpo\u0159it nemocn\u00e9 s RS nyn\u00ed mohou \u00fapln\u011b v\u0161ichni. \u201eV Nada\u010dn\u00edm fondu IMPULS (NFI) jsme letos p\u0159ipravili osv\u011btov\u00fd projekt Rozsvi\u0165me \u010cR, jeho\u017e symbolem je slune\u010dnice. Na\u0161\u00edm c\u00edlem je prost\u0159ednictv\u00edm happening\u016f v podob\u011b s\u00e1zen\u00ed slune\u010dnic na ve\u0159ejn\u00e1 prostranstv\u00ed po cel\u00e9 \u010cR p\u0159ibl\u00ed\u017eit ve\u0159ejnosti tuto v\u00e1\u017enou diagn\u00f3zu. Zasadit se o zlep\u0161en\u00ed mo\u017enost\u00ed l\u00e9\u010dby a rehabilita\u010dn\u00ed p\u00e9\u010de o pacienty s RS. Spole\u010dn\u00fdmi silami pak vybrat dostatek finan\u010dn\u00edch prost\u0159edk\u016f, kter\u00e9 umo\u017en\u00ed \u017e\u00edt nemocn\u00fdm plnohodnotn\u00fd \u017eivot nemoci navzdory,\u201c up\u0159es\u0148uje Kate\u0159ina B\u00e9mov\u00e1 za NFI.<\/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 do n\u011bj p\u0159isp\u00edv\u00e1 v\u0161ech 15 center specializovan\u00fdch na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed. Podle posledn\u00edch dat registr sleduje 9 044 pacient\u016f s biologickou l\u00e9\u010dbou a 1 955 pacient\u016f v progresivn\u00ed f\u00e1zi nemoci, kde je modern\u00ed l\u00e9\u010dba ne\u00fa\u010dinn\u00e1. \u017deny jsou v registru zastoupeny v 71,5 %. Nejv\u00edce pacient\u016f je z Prahy (1 722). V\u011bt\u0161ina (57 %) sledovan\u00fdch pacient\u016f pracuje na pln\u00fd \u00favazek, 13,5 % na \u010d\u00e1ste\u010dn\u00fd. Z\u0159izovatelem registru ReMuS je Nada\u010dn\u00ed fond IMPULS, kter\u00fd jej 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.nfimpuls.cz.<\/p>\n

O Nada\u010dn\u00edm fondu IMPULS<\/p>\n

Nada\u010dn\u00ed fond IMPULS vznikl roku 2000. Jeho c\u00edlem je podporovat projekty v oblasti v\u011bdy, v\u00fdzkumu a terapie pacient\u016f s roztrou\u0161enou skler\u00f3zou mozkom\u00ed\u0161n\u00ed v \u010cR. P\u0159isp\u00edv\u00e1 zejm\u00e9na na fyzioterapii a psychoterapii, kter\u00e9 nejsou hrazeny z ve\u0159ejn\u00e9ho zdravotn\u00edho poji\u0161t\u011bn\u00ed, v\u011bnuje se podpo\u0159e vzd\u011bl\u00e1v\u00e1n\u00ed a osv\u011btov\u00e9 \u010dinnosti. Jako jedin\u00e1 nest\u00e1tn\u00ed neziskov\u00e1 organizace v EU je z\u0159izovatelem celost\u00e1tn\u00edho Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS), jeho financov\u00e1n\u00ed zaji\u0161\u0165uje z vlastn\u00edch zdroj\u016f. V\u00edce informac\u00ed na www.nfimpuls.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. Na cel\u00e9m sv\u011bt\u011b trp\u00ed RS 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 (Ebstein-Barrov\u00e9 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

Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"

Poruchy n\u00e1lad, p\u0159ecitliv\u011blost, popudlivost, apatie. Probl\u00e9my s vyjad\u0159ov\u00e1n\u00edm emoc\u00ed a sebekontrolou, deprese \u010di my\u0161lenky na sebevra\u017edu \u2013 to jsou stavy a \u010dasto p\u0159ehl\u00ed\u017een\u00e9 projevy roztrou\u0161en\u00e9 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":18185,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-28223","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\/28223","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=28223"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/28223\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/18185"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=28223"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=28223"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=28223"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}