{"id":18869,"date":"2014-12-10T17:27:16","date_gmt":"2014-12-10T16:27:16","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=18869"},"modified":"2014-12-10T17:29:09","modified_gmt":"2014-12-10T16:29:09","slug":"roztrousena-skleroza-moznosti-navratu-do-aktivniho-zivota","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=18869","title":{"rendered":"„Roztrou\u0161en\u00e1 skler\u00f3za \u2013 mo\u017enosti n\u00e1vratu do aktivn\u00edho \u017eivota“"},"content":{"rendered":"

Postupn\u011b jsou v \u010cR za\u0159azov\u00e1ny do l\u00e9\u010dby RS nov\u00e9 l\u00e9\u010div\u00e9 p\u0159\u00edpravky (nov\u011b schv\u00e1len Aubagio), i kdy\u017e s \u010dasov\u00fdm zpo\u017ed\u011bn\u00edm proti vysp\u011bl\u00fdm st\u00e1t\u016fm Evropy. O onemocn\u011bn\u00ed, je\u017e nej\u010dast\u011bj\u0161\u00ed p\u0159\u00ed\u010dinou invalidity mlad\u00fdch lid\u00ed, se konala konference.<\/strong><\/p>\n

<\/p>\n

ilustra\u010dn\u00ed foto: Malingering \/ Flickr.com<\/em><\/p>\n

Dne 12. listopadu jsme se se Sofi\u00ed Do\u0161k\u00e1\u0159ovou, za organizaci ROSKA \u010cesk\u00e1 L\u00edpa, z\u00fa\u010dastnili konference na t\u00e9ma „Roztrou\u0161en\u00e1 skler\u00f3za \u2013 mo\u017enosti n\u00e1vratu do aktivn\u00edho \u017eivota“, kter\u00e1 se konala na p\u016fd\u011b PSP \u010cesk\u00e9 republiky.<\/strong><\/p>\n

Bylo konstatov\u00e1no, \u017ee RS je nej\u010dast\u011bj\u0161\u00ed p\u0159\u00ed\u010dinou invalidity mlad\u00fdch lid\u00ed. Je to z\u00e1ke\u0159n\u00e9, nevyl\u00e9\u010diteln\u00e9 a nep\u0159edv\u00eddateln\u00e9 onemocn\u011bn\u00ed doprov\u00e1zen\u00e9 v\u00fdznamn\u00fdm poklesem kvality \u017eivota jednotlivc\u016f i jejich rodin.
\nV\u011bk v dob\u011b stanoven\u00ed dg. se pohybuje od 20 \u2013 40 let, z toho je 2\/3 \u017een. U RS neexistuje \u00fa\u010dinn\u00e1 prevence, nelze ji vyl\u00e9\u010dit.<\/p>\n

K 31.12.2013 bylo u n\u00e1s vypl\u00e1ceno celkem 4 130 invalidn\u00edch d\u016fchod\u016f z d\u016fvodu onemocn\u011bn\u00ed RS (v Mezin\u00e1rodn\u00ed klasifikaci nemoc\u00ed WHO je RS uvedena jako soubor onemocn\u011bn\u00ed pod dg. skupinami G 35 \u2013G 37) a za cel\u00fd rok byla takto vyplacena \u010d\u00e1stka vy\u0161\u0161\u00ed jak 749 mil. K\u010d. L\u00e9\u010dba nemocn\u00fdch s RS pat\u0159\u00ed do skupiny finan\u010dn\u011b n\u00e1ro\u010dn\u00e9 p\u00e9\u010de.<\/p>\n

Z\u00e1sadn\u00ed v\u00fdznam v diagnostice a l\u00e9\u010db\u011b RS p\u0159ineslo a\u017e zaveden\u00ed magnetick\u00e9 rezonance do klinick\u00e9 praxe v roce 1983 a registrace prvn\u00edho biologick\u00e9ho p\u0159\u00edpravku na l\u00e9\u010dbu RS v \u010cR (interferon ?) v r. 1996. N\u00e1sledoval vznik prvn\u00edch center pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed. V sou\u010dasn\u00e9 dob\u011b p\u016fsob\u00ed v \u010cR 15 takov\u00fdchto center, l\u00e9\u010deno je v\u00edce jak 7 000 pacient\u016f (ro\u010dn\u011b p\u0159ib\u00fdv\u00e1 cca 700 nov\u00fdch). Do t\u011bchto center je tak\u00e9 sm\u011brov\u00e1na \u00fahrada p\u00e9\u010de od zdravotn\u00edch poji\u0161\u0165oven.<\/p>\n

Postupn\u011b jsou v \u010cR za\u0159azov\u00e1ny do l\u00e9\u010dby RS nov\u00e9 l\u00e9\u010div\u00e9 p\u0159\u00edpravky (od 1. 11. 2014 jako hrazen\u00fd p\u0159\u00edpravek nov\u011b schv\u00e1leno Aubagio \u2013 teriflunomid), i kdy\u017e s \u010dasov\u00fdm zpo\u017ed\u011bn\u00edm proti vysp\u011bl\u00fdm st\u00e1t\u016fm Evropy.<\/p>\n

Bylo konstatov\u00e1no, \u017ee pro zv\u00fd\u0161en\u00ed efektivity l\u00e9\u010dby RS jsou d\u016fle\u017eit\u00e9 v\u010dasn\u00e1 diagnostika onemocn\u011bn\u00ed, trval\u00e1 kvalitn\u00ed l\u00e9ka\u0159sk\u00e1 p\u00e9\u010de, v\u010dasn\u00e1 a komplexn\u00ed rehabilitace.<\/p>\n

C\u00edlem je minimalizace trval\u00e9ho \u010di dlouhodob\u00e9ho po\u0161kozen\u00ed pacienta, udr\u017een\u00ed jeho sob\u011bsta\u010dnosti, fyzick\u00e9 aktivity a sn\u00ed\u017een\u00ed progrese onemocn\u011bn\u00ed. Z anal\u00fdzy probl\u00e9m\u016f p\u00e9\u010de o pacienty s RS p\u0159edlo\u017een\u00e9 na konferenci vyplynuly jako \u00fakoly pro nejbli\u017e\u0161\u00ed obdob\u00ed:<\/p>\n

– \u00faprava pravidel \u00fahrady t\u00e9to p\u00e9\u010de tak, aby syst\u00e9m reagoval pru\u017en\u011b na pokrok medic\u00edny; zaji\u0161t\u011bn\u00ed dostupnosti l\u00e9\u010dby podle medic\u00edny zalo\u017een\u00e9 na d\u016fkazech
\n– vypracov\u00e1n\u00ed koncepce komplexn\u00ed p\u00e9\u010de s multidisciplin\u00e1rn\u00edmi t\u00fdmy
\n– zv\u00fd\u0161en\u00ed v\u00fdznamu komplexn\u00ed rehabilitace pacient\u016f s RS s d\u016frazem na v\u010dasnou rehabilitaci; pot\u0159eba z\u00e1kona o komplexn\u00ed rehabilita\u010dn\u00ed p\u00e9\u010di
\n– nov\u00fd pohled na pr\u00e1ci center pro demyeliniza\u010dn\u00ed onemocn\u011bn\u00ed a jejich adekv\u00e1tn\u00ed finan\u010dn\u00ed ohodnocen\u00ed
\n– podpora funk\u010dn\u00edch registr\u016f pacient\u016f s RS<\/p>\n

Diskuse byla soust\u0159ed\u011bna zejm\u00e9na na pot\u0159ebu vytvo\u0159en\u00ed nov\u00e9ho legislativn\u00edho r\u00e1mce, vypracov\u00e1n\u00ed koncepce komplexn\u00ed p\u00e9\u010de a v\u00fdm\u011bnu zku\u0161enost\u00ed z pr\u00e1ce pacientsk\u00fdch organizac\u00ed. O v\u00fdsledc\u00edch t\u00e9to jist\u011b z\u00e1slu\u017en\u00e9 konference jsme podali informace na sch\u016fzi na\u0161\u00ed organizace ROSKA a touto cestou se chceme o n\u011b pod\u011blit i s \u0161ir\u0161\u00ed ve\u0159ejnost\u00ed.<\/p>\n

Jsme p\u0159esv\u011bd\u010deni, \u017ee k efektu l\u00e9\u010dby RS mus\u00ed p\u0159isp\u011bt i n\u00e1\u0161 vlastn\u00ed aktivn\u00ed p\u0159\u00edstup ke zvl\u00e1d\u00e1n\u00ed dopadu tohoto onemocn\u011bn\u00ed. D\u016fkazem toho jsou i na\u0161e dlouhodob\u00e9 a r\u016fznorod\u00e9 aktivity (organizace spolkov\u00e9 \u010dinnosti, poradenstv\u00ed, p\u0159edn\u00e1\u0161kov\u00e1 a osv\u011btov\u00e1 \u010dinnost, rehabilitace a rekondi\u010dn\u00ed pobyty, hipoterapie, ergoterapie, arteterapie apod.).<\/p>\n

ing. Pavel B\u0159ezina, Roska \u010cesk\u00e1 L\u00edpa<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Postupn\u011b jsou v \u010cR za\u0159azov\u00e1ny do l\u00e9\u010dby RS nov\u00e9 l\u00e9\u010div\u00e9 p\u0159\u00edpravky (nov\u011b schv\u00e1len Aubagio), i kdy\u017e s \u010dasov\u00fdm zpo\u017ed\u011bn\u00edm proti vysp\u011bl\u00fdm st\u00e1t\u016fm Evropy. O onemocn\u011bn\u00ed, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17308,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-18869","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\/18869","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=18869"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/18869\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17308"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=18869"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=18869"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=18869"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}