{"id":30518,"date":"2018-05-24T10:17:25","date_gmt":"2018-05-24T08:17:25","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30518"},"modified":"2018-05-24T10:17:25","modified_gmt":"2018-05-24T08:17:25","slug":"svetovy-den-rs-pripomenou-pacienti-sazenim-slunecnic-koncertem-i-plavbou","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30518","title":{"rendered":"Sv\u011btov\u00fd den RS p\u0159ipomenou pacienti s\u00e1zen\u00edm slune\u010dnic, koncertem i plavbou"},"content":{"rendered":"

S\u00e1zen\u00ed slune\u010dnic, plavba lod\u00ed po Vltav\u011b, koncert tria Michala Prokopa, to jsou jen n\u011bkter\u00e9 z aktivit, kter\u00fdmi p\u0159ipom\u00ednaj\u00ed pacientsk\u00e9 organizace Sv\u011btov\u00fd den roztrou\u0161en\u00e9 skler\u00f3zy (RS) v \u010cesk\u00e9 republice. Letos p\u0159ipad\u00e1 na 30. kv\u011btna.<\/strong>
\n
\nRS postihuje hlavn\u011b mlad\u00e9 lidi, nej\u010dast\u011bji \u017eeny, a p\u0159in\u00e1\u0161\u00ed poruchy vid\u011bn\u00ed, hybnosti i dal\u0161\u00ed pot\u00ed\u017ee. V\u010dasn\u00e1 \u00fa\u010dinn\u00e1 modern\u00ed l\u00e9\u010dba dok\u00e1\u017ee zachr\u00e1nit n\u011bkolik des\u00edtek let aktivn\u00edho \u017eivota.<\/p>\n

V 10 m\u011bstech \u010cesk\u00e9 republiky p\u0159ipravuj\u00ed region\u00e1ln\u00ed pacientsk\u00e9 organizace akci Rozsvi\u0165me \u010cR. Lid\u00e9 p\u0159i n\u00ed budou s\u00e1zet slune\u010dnice jako symbol nad\u011bje a optimismu. Psychika toti\u017e hraje v l\u00e9\u010db\u011b roztrou\u0161en\u00e9 skler\u00f3zy d\u016fle\u017eitou roli. \u201eC\u00edlem je podpo\u0159it pacienty a z\u00e1rove\u0148 upozornit na tuto nemoc, o kter\u00e9 bohu\u017eel st\u00e1le panuje mnoho m\u00fdt\u016f,\u201c \u0159\u00edk\u00e1 Kate\u0159ina B\u00e9mov\u00e1 z Nada\u010dn\u00edho fondu IMPULS, kter\u00fd akce po\u0159\u00e1d\u00e1 nebo zast\u0159e\u0161uje. D\u016fsledkem neinformovanosti je podle n\u00ed to, \u017ee se n\u011bkte\u0159\u00ed lid\u00e9 nel\u00e9\u010d\u00ed a ni\u010d\u00ed si tak vlastn\u00ed zdrav\u00ed.<\/p>\n

Osv\u011bta a \u0161ir\u0161\u00ed pov\u011bdom\u00ed o nemoci m\u00e1 p\u0159isp\u011bt i k rychlej\u0161\u00ed diagnostice, proto\u017ee v\u010dasn\u00e9 zah\u00e1jen\u00ed l\u00e9\u010dby je u RS st\u011b\u017eejn\u00ed.<\/p>\n

RS Centrum ve V\u0161eobecn\u00e9 fakultn\u00ed nemocnici v Praze na Karlov\u011b n\u00e1m\u011bst\u00ed p\u0159ipravuje ke Sv\u011btov\u00e9mu dni RS den otev\u0159en\u00fdch dve\u0159\u00ed. L\u00e9ka\u0159i na n\u011bm budou p\u0159edn\u00e1\u0161et a diskutovat s pacienty nap\u0159\u00edklad o depres\u00edch, zdrav\u00e9m \u017eivotn\u00edm stylu a sexualit\u011b, to v\u0161e ve vztahu k nemoci. \u201eKrom\u011b novinek v oblasti v\u00fdzkumu chceme informovat tak\u00e9 o tom, co mohou pacienti sami pro sebe ud\u011blat, nap\u0159\u00edklad o mo\u017enostech cvi\u010den\u00ed,\u201c up\u0159es\u0148uje za po\u0159adatele fyzioterapeutka Kl\u00e1ra Novotn\u00e1. Akce se uskute\u010dn\u00ed 29. kv\u011btna od 15 do 18 hodin.<\/p>\n

Odborn\u00e9 setk\u00e1n\u00ed s p\u0159edn\u00e1\u0161kami a konzultacemi p\u0159ipravili na 23. kv\u011btna pro ve\u0159ejnost l\u00e9ka\u0159i a dal\u0161\u00ed specialist\u00e9 v Sanatori\u00edch Klimkovice na Ostravsku. Pacientsk\u00e1 organizace ROSKA \u010cesk\u00e9 Bud\u011bjovice pl\u00e1nuje na 30. kv\u011btna benefi\u010dn\u00ed koncert, na kter\u00e9m jako hlavn\u00ed host vystoup\u00ed Michal Prokop trio. V Praze uspo\u0159\u00e1d\u00e1 Unie ROSKA t\u00fd\u017e den pro pacienty a jejich bl\u00edzk\u00e9 plavbu lod\u00ed po Vltav\u011b.<\/p>\n

Akce jako Rozsvi\u0165me \u010cR maj\u00ed podle Kate\u0159iny B\u00e9mov\u00e9 z Nada\u010dn\u00edho fondu IMPULS uk\u00e1zat, \u017ee i s tak v\u00e1\u017enou diagn\u00f3zou jako RS je mo\u017en\u00e9 \u017e\u00edt kvalitn\u00ed \u017eivot. IMPULS v tom nemocn\u00fdm pom\u00e1h\u00e1 ji\u017e 18 let. Za tu dobu poskytl na v\u00fdzkum nemoci, fyzioterapii i psychoterapii, n\u00e1kupy p\u0159\u00edstroj\u016f i osv\u011btu p\u0159es 33 milion\u016f korun.<\/p>\n

Pr\u00e1ci fondu je mo\u017en\u00e9 finan\u010dn\u011b podpo\u0159it na \u00fa\u010dtu \u010d\u00edslo 19-2833670227\/0100. Lze tak\u00e9 vyu\u017e\u00edt n\u011bkterou z variant d\u00e1rcovsk\u00fdch SMS nebo pos\u00edlat pen\u00edze prost\u0159ednictv\u00edm slu\u017eby darujspravne.cz. \u201ePen\u00edze, kter\u00e9 vybereme, okam\u017eit\u011b rozd\u011bl\u00edme organizac\u00edm, kter\u00e9 se o pacienty staraj\u00ed a pom\u00e1haj\u00ed jim \u017e\u00edt plnohodnotn\u00fd \u017eivot RS navzdory,\u201c up\u0159es\u0148uje B\u00e9mov\u00e1.<\/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\u00f3nu nemocn\u00fdch, v \u010cesku se odhaduje po\u010det pacient\u016f na 20 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 (Epstein-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

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

Nada\u010dn\u00ed fond IMPULS vznikl v roce 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 pln\u011b 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) a jeho financov\u00e1n\u00ed zaji\u0161\u0165uje z vlastn\u00edch zdroj\u016f. V\u00edce informac\u00ed na www.nfimpuls.cz.<\/p>\n

O Unii ROSKA<\/p>\n

Posl\u00e1n\u00edm Unie ROSKA je pom\u00e1hat lidem s roztrou\u0161enou skler\u00f3zou \u017e\u00edt kvalitn\u00ed, d\u016fstojn\u00fd a plnohodnotn\u00fd \u017eivot. Unie ROSKA ve sv\u00e9 \u010dinnosti nav\u00e1zala na spolky Roska, kter\u00e9 v \u010cR vznikaly od roku 1983. Jako \u010cesk\u00e1 multiple sclerosis (MS) spole\u010dnost je aktivn\u00edm \u010dlenem mezin\u00e1rodn\u00ed federace MSIF a jej\u00ed evropsk\u00e9 platformy EMSP p\u0159i EU. Velice efektivn\u00ed je sv\u00e9pomoc posti\u017een\u00fdch, kterou realizuje 26 samostatn\u00fdch region\u00e1ln\u00edch spolk\u016f Roska. Spolek m\u00e1 celorepublikovou p\u016fsobnost ve v\u0161ech kraj\u00edch \u010cR a m\u00e1 asi 1500 \u010dlen\u016f. V sou\u010dasn\u00e9 dob\u011b stoj\u00ed v \u010dele Unie ROSKA sedmi\u010dlenn\u00e1 v\u00fdkonn\u00e1 rada.<\/p>\n

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

S\u00e1zen\u00ed slune\u010dnic, plavba lod\u00ed po Vltav\u011b, koncert tria Michala Prokopa, to jsou jen n\u011bkter\u00e9 z aktivit, kter\u00fdmi p\u0159ipom\u00ednaj\u00ed pacientsk\u00e9 organizace Sv\u011btov\u00fd den roztrou\u0161en\u00e9 skler\u00f3zy (RS) […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":28428,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-30518","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\/30518","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=30518"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30518\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/28428"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30518"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30518"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30518"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}