{"id":21475,"date":"2015-05-26T08:36:05","date_gmt":"2015-05-26T06:36:05","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=21475"},"modified":"2015-05-26T08:36:05","modified_gmt":"2015-05-26T06:36:05","slug":"roztrousenou-sklerozu-ma-17-000-cechu-moderni-lecbu-9000-z-nich","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=21475","title":{"rendered":"Roztrou\u0161enou skler\u00f3zu m\u00e1 17.000 \u010cech\u016f, modern\u00ed l\u00e9\u010dbu 9000 z nich"},"content":{"rendered":"<p><strong>Roztrou\u0161enou skler\u00f3zou trp\u00ed v \u010cesku na 17.000 lid\u00ed, modern\u00ed biologickou l\u00e9\u010dbu, kter\u00e1 pacienty udr\u017e\u00ed d\u00e9le aktivn\u00ed, m\u00e1 jen 9000 z nich. Data z registru p\u0159itom potvrzuj\u00ed, \u017ee v\u010dasn\u00e9 nasazen\u00ed t\u00e9to l\u00e9\u010dby odd\u00e1l\u00ed jejich invaliditu, \u0159ekla p\u0159edn\u00ed \u010desk\u00e1 odbornice na l\u00e9\u010dbu roztrou\u0161en\u00e9 skler\u00f3zy profesorka Eva Havrdov\u00e1.<\/strong><!--more--><\/p>\n<p>foto: puravida \/ MorgueFile <\/p>\n<p>Registr (ReMuS) za\u010dal p\u0159ed dv\u011bma roky shroma\u017e\u010fovat data o l\u00e9\u010db\u011b, chce z\u00edskat argumenty pro zdravotn\u00ed poji\u0161\u0165ovny a dal\u0161\u00ed instituce, aby zp\u0159\u00edstupnily efektivn\u00ed l\u00e9\u010dbu za podm\u00ednek, je\u017e plat\u00ed ve vysp\u011bl\u00e9m sv\u011bt\u011b. Registr spravuje nada\u010dn\u00ed fond Impuls, data do n\u011bj vkl\u00e1daj\u00ed l\u00e9ka\u0159i a sestry z 12 RS center, sledov\u00e1no je nyn\u00ed 6000 pacient\u016f.<\/p>\n<p>&#8222;V pr\u016fm\u011bru se lid\u00e9 o diagn\u00f3ze dozv\u011bd\u00ed kolem t\u0159ic\u00edtky, do konce \u017eivota se j\u00ed u\u017e nezbav\u00ed. Hrajeme tady o ka\u017ed\u00fd den, abychom udr\u017eeli pacienty v pr\u00e1ci, aktivn\u00ed a bez p\u0159\u00edznak\u016f. A k tomu n\u00e1m pom\u00e1h\u00e1 biologick\u00e1 l\u00e9\u010dba, ta se v\u0161ak nedostane a\u017e k tis\u00edcovce vhodn\u00fdch pacient\u016f a je\u0161t\u011b vy\u0161\u0161\u00edmu po\u010dtu t\u011bch, u kter\u00fdch dosavadn\u00ed l\u00e9\u010dba nezabrala,&#8220; \u0159ekla Havrdov\u00e1.<\/p>\n<p>P\u0159\u00ed\u010dinu vid\u00ed v tom, \u017ee krit\u00e9ria pro nasazen\u00ed biologick\u00e9 l\u00e9\u010dby jsou v \u010cR podstatn\u011b p\u0159\u00edsn\u011bj\u0161\u00ed ne\u017e ve vysp\u011bl\u00fdch zem\u00edch, \u0159ada pacient\u016f tak dostane sv\u016fj l\u00e9k pozd\u011b.<\/p>\n<p>\u010cesk\u00fd registr dnes zve\u0159ejnil p\u0159i p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne boje proti roztrou\u0161en\u00e9 skler\u00f3ze, kter\u00fd p\u0159ipad\u00e1 na 27. kv\u011btna, prvn\u00ed ucelen\u00e1 data. Vypl\u00fdv\u00e1 z nich, \u017ee 68,8 procenta pacient\u016f s biologickou l\u00e9\u010dbou m\u016f\u017ee pracovat na pln\u00fd nebo \u010d\u00e1ste\u010dn\u00fd \u00favazek. Nejv\u011bt\u0161\u00ed d\u00edl, 36,5 procenta, m\u00e1 jen lehk\u00e9 pot\u00ed\u017ee, kter\u00e9 jim nekomplikuj\u00ed b\u011b\u017en\u00fd \u017eivot. S pomoc\u00ed biologick\u00e9 l\u00e9\u010dby mohou \u017eeny zvl\u00e1dnout i t\u011bhotenstv\u00ed. Za dobu existence registru porodilo 110 pacientek.<\/p>\n<p>Z 6000 pacient\u016f zapsan\u00fdch do registru tvo\u0159\u00ed 72 procent \u017eeny. Nejv\u00edc pacient\u016f je ve v\u011bku 30 a\u017e 40 let, 28 pacient\u016f je mlad\u0161\u00edch 18 let, z nich \u010dty\u0159em je m\u00e9n\u011b ne\u017e 15 let. Pr\u016fm\u011brn\u00fd v\u011bk v dob\u011b za\u010d\u00e1tku onemocn\u011bn\u00ed je 30,2 roku, nejmlad\u0161\u00ed sledovan\u00fd pacient m\u011bl v dob\u011b po\u010d\u00e1tku nemoci 3,5 roku. Nejv\u00edce sledovan\u00fdch, 1193, je z Prahy, p\u0159es 59 procent zapsan\u00fdch v registru jsou poji\u0161t\u011bnci V\u0161eobecn\u00e9 zdravotn\u00ed poji\u0161\u0165ovny.<\/p>\n<p>L\u00e9ka\u0159ka pra\u017esk\u00e9ho RS centra Dana Hor\u00e1kov\u00e1 doplnila, \u017ee zahrani\u010dn\u00ed registry, kter\u00e9 shroma\u017e\u010fuj\u00ed data deset a v\u00edce let, maj\u00ed u\u017e doklady o tom, nakolik je modern\u00ed l\u00e9\u010dba \u00fa\u010dinn\u00e1.<\/p>\n<p>&#8222;Ze zahrani\u010d\u00ed v\u00edme, \u017ee pacient, kter\u00fd dostane l\u00e9\u010dbu hned, tak po osmi letech v\u011bt\u0161inou norm\u00e1ln\u011b funguje a pracuje, zat\u00edmco pacient, kter\u00fd ji nedostane, je \u010dast\u011bji v daleko hor\u0161\u00edm stavu. M\u011bs\u00ed\u010dn\u011b stoj\u00ed l\u00e9\u010dba jednoho \u010dlov\u011bka s roztrou\u0161enou skler\u00f3zou 15.000 a\u017e 19.000 korun, bez l\u00e9\u010dby se n\u00e1klady na n\u011bj \u010dasem vy\u0161plhaj\u00ed na dvojn\u00e1sobek,&#8220; shrnula Havrdov\u00e1.<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Roztrou\u0161enou skler\u00f3zou trp\u00ed v \u010cesku na 17.000 lid\u00ed, modern\u00ed biologickou l\u00e9\u010dbu, kter\u00e1 pacienty udr\u017e\u00ed d\u00e9le aktivn\u00ed, m\u00e1 jen 9000 z nich. Data z registru p\u0159itom <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=21475\" title=\"Roztrou\u0161enou skler\u00f3zu m\u00e1 17.000 \u010cech\u016f, modern\u00ed l\u00e9\u010dbu 9000 z nich\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":21476,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-21475","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\/21475","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=21475"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21475\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21476"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21475"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21475"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21475"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}