{"id":22830,"date":"2015-09-24T11:02:55","date_gmt":"2015-09-24T09:02:55","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=22830"},"modified":"2015-09-24T11:04:08","modified_gmt":"2015-09-24T09:04:08","slug":"hleda-se-16-tisic-pacientu-s-roztrousenou-sklerozou","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=22830","title":{"rendered":"Hled\u00e1 se 16 tis\u00edc pacient\u016f s roztrou\u0161enou skler\u00f3zou"},"content":{"rendered":"

\u201eHled\u00e1me 16 tis\u00edc osob \u2013 mu\u017e\u016f a \u017een. Pozn\u00e1vac\u00ed znamen\u00ed \u2013 roztrou\u0161en\u00e1 skler\u00f3za a chu\u0165 cvi\u010dit.\u201c Takto by z\u0159ejm\u011b zn\u011bl inzer\u00e1t Nada\u010dn\u00edho fondu IMPULS, organiz\u00e1tora sportovn\u00ed akce Maraton s roztrou\u0161enou skler\u00f3zou. Pro lidi s roztrou\u0161enou skler\u00f3zu (RS) by se toti\u017e pohyb m\u011bl st\u00e1t ned\u00edlnou sou\u010d\u00e1st\u00ed l\u00e9\u010dby.<\/strong>
\n<\/p>\n

foto: MaRS – cvi\u010den\u00ed v Pr\u016fhonic\u00edch<\/p>\n

\u201eCvi\u010d\u00edm, proto\u017ee mi cvi\u010den\u00ed pom\u00e1h\u00e1 zlep\u0161it kondici, ale i stav mysli ovlivn\u011bn\u00fd nemoc\u00ed. Proto jsem p\u0159i rehabilitaci v roce 2011 vymyslel 24hodinov\u00fd maraton cvi\u010den\u00ed n\u00e1s pacient\u016f s RS (MaRS). Kdy\u017e si na posledn\u00ed ro\u010dn\u00edk p\u0159i\u0161lo zacvi\u010dit asi tis\u00edc lid\u00ed, \u0159\u00edkal jsem si, kde je t\u011bch zb\u00fdvaj\u00edc\u00edch 16 tis\u00edc? Tak m\u011b napadlo, \u017ee je pojedeme hledat, pod\u011bl\u00edme se o zku\u0161enosti a z\u00edsk\u00e1me je pro my\u0161lenku pohybu a rehabilitace,\u201c vysv\u011btluje Roman Kvapil, kter\u00fd se s nemoc\u00ed pot\u00fdk\u00e1 u\u017e 13 let. <\/p>\n

Expedice Nada\u010dn\u00edho fondu IMPULS tak 28. z\u00e1\u0159\u00ed vyraz\u00ed na \u201espanilou j\u00edzdu\u201c po 16 \u010desk\u00fdch a moravsk\u00fdch m\u011bstech. Za 16 dn\u00ed ujedou 16 set kilometr\u016f, a spole\u010dn\u011b s pacienty v jednotliv\u00fdch m\u011bstech ujdou denn\u011b 16 tis\u00edc krok\u016f. S pomoc\u00ed m\u00edstn\u00edch pacientsk\u00fdch sdru\u017een\u00ed pozve pacienty a ve\u0159ejnost, aby se p\u0159\u00ed\u0161t\u00ed rok, 4. a 5. b\u0159ezna z\u00fa\u010dastnili 5. ro\u010dn\u00edku cvi\u010debn\u00edho maratonu MaRS 2016. \u201eLid\u00e9 se na setk\u00e1n\u00ed dozv\u011bd\u00ed o cvi\u010debn\u00edm maratonu s roztrou\u0161enou skler\u00f3zou, komplexn\u00edm p\u0159\u00edstupu k l\u00e9\u010db\u011b, aktivit\u00e1ch m\u00edstn\u00edch pacient\u016f a terapeut\u016f a sami se budou moci osobn\u011b zapojit do pohybov\u00e9 krokovac\u00ed aktivity,\u201c vysv\u011btlila Kate\u0159ina B\u00e9mov\u00e1 z Nada\u010dn\u00edho fondu IMPULS. Organiz\u00e1to\u0159i p\u0159ipravili pro \u00fa\u010dastn\u00edky setk\u00e1n\u00ed i uk\u00e1zky cvi\u010den\u00ed a tr\u00e9nink mozku a pam\u011bti.<\/p>\n

V ka\u017ed\u00e9m m\u011bst\u011b si \u00fa\u010dastn\u00edci poslechnou cestovatelsk\u00e9 p\u0159\u00edb\u011bhy Ale\u0161e Zaj\u00ed\u010dka, pacienta s RS, kter\u00e9ho nemoc nezastavila v jeho cestovatelsk\u00fdch choutk\u00e1ch. Projel k\u0159\u00ed\u017eem kr\u00e1\u017eem kus Evropy, nav\u0161t\u00edvil Nep\u00e1l, Kam\u010datku i Barmu, procestoval Filip\u00edny. \u201eRozhodl jsem se podpo\u0159it organiz\u00e1tory t\u00edm, \u017ee s nimi absolvuji celou putovn\u00ed expedici a popov\u00edd\u00e1m, jak aktivn\u011b lze s nemoc\u00ed \u017e\u00edt. MaRS je p\u0159edev\u0161\u00edm o pohybu a moje \u201ev\u00fdletov\u00e1n\u00ed“ se bez t\u00e9to aktivity neobejde. D\u00edky modern\u00ed biologick\u00e9 l\u00e9\u010db\u011b zvl\u00e1d\u00e1m v\u0161e, co si umanu. Vezu s sebou v\u017edy dostatek injekc\u00ed, a ty mi umo\u017en\u00ed procestovat zbylou polovinu sv\u011bta, kam jsme s partnerkou je\u0161t\u011b nezav\u00edtali. Jen si je nesm\u00edm zapomenout p\u00edchnout,\u201c \u0159\u00edk\u00e1 s humorem sob\u011b vlastn\u00edm Ale\u0161 Zaj\u00ed\u010dek. Spole\u010dn\u011b s dal\u0161\u00edmi aktivn\u00edmi pacienty se pokou\u0161\u00ed nepodl\u00e9hat r\u016fzn\u00fdm m\u00fdt\u016fm, kter\u00e9 o t\u00e9to nevyl\u00e9\u010diteln\u00e9 nemoci panuj\u00ed, a bojuje s nimi pozitivn\u00edm p\u0159\u00edstupem.<\/p>\n

Stav pacient\u016f podle l\u00e9ka\u0159\u016f pozitivn\u011b ovliv\u0148uje v\u010dasn\u00e9 zaveden\u00ed biologick\u00e9 l\u00e9\u010dby, dodr\u017eov\u00e1n\u00ed l\u00e9\u010debn\u00e9ho re\u017eimu, dobr\u00e1 spolupr\u00e1ce s l\u00e9ka\u0159em, intenzivn\u00ed rehabilitace a pravideln\u00fd pohyb. \u201ePacienti s roztrou\u0161enou skler\u00f3zou se pot\u00fdkaj\u00ed s \u00fanavou, depresemi, bolestiv\u00fdmi spasmy a \u0159adou dal\u0161\u00edch pot\u00ed\u017e\u00ed, kde pravideln\u00e9 cvi\u010den\u00ed pom\u00e1h\u00e1. Putovn\u00ed expedice na podporu maratonu by je mohla povzbudit v tom, aby nemoci vzdorovali a p\u0159i\u0161li si zacvi\u010dit,\u201c podotkla prof. MUDr. Eva Havrdov\u00e1, CSc., vedouc\u00ed l\u00e9ka\u0159ka MS Centra Neurologick\u00e9 kliniky 1. LF UK a VFN v Praze.<\/p>\n

Expedice Hled\u00e1 se 16 tis\u00edc, slo\u017een\u00e1 z dobrovoln\u00edk\u016f, pacient\u016f, terapeut\u016f a l\u00e9ka\u0159\u016f, vyjede z Prahy \u2013 Karlova n\u00e1m\u011bst\u00ed v pond\u011bl\u00ed 28. z\u00e1\u0159\u00ed v 10 hodin do Karlov\u00fdch Var\u016f. V dal\u0161\u00edch dnech nav\u0161t\u00edv\u00ed Plze\u0148, \u010cesk\u00e9 Bud\u011bjovice, Jihlavu, \u017d\u010f\u00e1r nad S\u00e1zavou, Brno, Uhersk\u00e9 Hradi\u0161t\u011b, Vset\u00edn, Olomouc, Ostravu, \u00dast\u00ed nad Orlic\u00ed, Hradec Kr\u00e1lov\u00e9, Pod\u011bbrady, Liberec, Teplice a turn\u00e9 uzav\u0159e 13. \u0159\u00edjna od 14 hodin odpoledn\u00edm programem zp\u011bt v Praze na Karlov\u011b n\u00e1m\u011bst\u00ed. <\/p>\n

O NF IMPULS
\nNada\u010dn\u00ed fond IMPULS vznikl roku 2000 s c\u00edlem 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 i 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 provozovatelem celost\u00e1tn\u00edho Registru pacient\u016f s roztrou\u0161enou skler\u00f3zou (ReMuS), jeho financov\u00e1n\u00ed zaji\u0161\u0165uje z vlastn\u00edch zdroj\u016f. Letos slav\u00ed v\u00fdro\u010d\u00ed 15 let od sv\u00e9ho vzniku. V\u00edce informac\u00ed na www.nfimpuls.cz
\nO roztrou\u0161en\u00e9 skler\u00f3ze
\nRoztrou\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. 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. Podle epidemiologick\u00fdch pr\u016fzkum\u016f se v \u010cR nejv\u00edce vyskytuje RS na severu \u010cech. L\u00e9ka\u0159i to p\u0159isuzuj\u00ed zhor\u0161en\u00e9mu \u017eivotn\u00edmu prost\u0159ed\u00edm v t\u00e9to oblasti. Informace o roztrou\u0161en\u00e9 skler\u00f3ze lze nal\u00e9zt i na port\u00e1le www.rskompas.cz. Na nej\u010dast\u011bj\u0161\u00ed m\u00fdty o nemoci upozor\u0148uje port\u00e1l www.bezmytu.cz.<\/p>\n

Tiskov\u00e1 zpr\u00e1va \u2013 Nada\u010dn\u00ed fond IMPULS<\/p>\n","protected":false},"excerpt":{"rendered":"

\u201eHled\u00e1me 16 tis\u00edc osob \u2013 mu\u017e\u016f a \u017een. Pozn\u00e1vac\u00ed znamen\u00ed \u2013 roztrou\u0161en\u00e1 skler\u00f3za a chu\u0165 cvi\u010dit.\u201c Takto by z\u0159ejm\u011b zn\u011bl inzer\u00e1t Nada\u010dn\u00edho fondu IMPULS, organiz\u00e1tora […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":22832,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-22830","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\/22830","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=22830"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22830\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/22832"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22830"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22830"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22830"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}