{"id":47944,"date":"2024-04-11T13:14:25","date_gmt":"2024-04-11T11:14:25","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=47944"},"modified":"2024-04-11T13:14:25","modified_gmt":"2024-04-11T11:14:25","slug":"cesky-hemofilik-se-pripravuje-k-vystupu-na-mont-blanc","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=47944","title":{"rendered":"\u010cesk\u00fd hemofilik se p\u0159ipravuje k\u00a0v\u00fdstupu na Mont Blanc"},"content":{"rendered":"\n

\u010cervenec se kvapem bl\u00ed\u017e\u00ed a kr\u00e1t\u00ed se i \u010das na p\u0159\u00edpravu t\u0159iadvacetilet\u00e9ho Daniela \u0160imka. Ten se jako prvn\u00ed \u010cech s hemofili\u00ed pokus\u00ed v\u00a0\u010dervenci zdolat nejvy\u0161\u0161\u00ed vrchol Alp \u2013 Mont Blanc (4 807,81 m n. m.). Je\u0161t\u011b p\u0159ed 30 lety p\u0159itom b\u011b\u017en\u011b hemofiliky tato vrozen\u00e1 nemoc sm\u011brovala k\u00a0invalidit\u011b. D\u00edky modern\u00ed\u00a0l\u00e9\u010db\u011b se v\u0161ak m\u016f\u017ee Daniel \u0160imek na za\u010d\u00e1tku \u010dervence p\u0159ipojit k\u00a0v\u00fdprav\u011b veden\u00e9 Chrisem Bombardierem, horolezcem s\u00a0hemofili\u00ed, a sv\u00fdm v\u00fdstupem podpo\u0159it mezin\u00e1rodn\u00ed projekt <\/strong>Save One Life<\/strong><\/a>. <\/strong><\/p>\n\n\n\n

Pro \u00fa\u010dast na\u00a0expedici \u0160imek pot\u0159ebuje vybrat 4 000 eur, chyb\u00ed mu je\u0161t\u011b zhruba \u010dtvrtina. Pen\u00edze pak poputuj\u00ed p\u0159\u00edmo na \u00fahradu l\u00e9\u010dby pacient\u016f s\u00a0hemofili\u00ed. Na vrchol Mont Blanc odnese Daniel i<\/strong> <\/em>vzkazy ostatn\u00edch hemofilik\u016f \u2013 \u010dlen\u016f \u010cesk\u00e9ho svazu hemofilik\u016f a Hemojunioru, kte\u0159\u00ed ho v\u00a0cest\u011b podporuj\u00ed. Tyto vzkazy mohou \u010dlenov\u00e9 obou spolk\u016f pos\u00edlat prost\u0159ednictv\u00edm soci\u00e1ln\u00edch s\u00edt\u00ed nebo e-mailu u\u00a0p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne hemofilie, kter\u00fd ka\u017edoro\u010dn\u011b p\u0159ipad\u00e1 na 17. dubna.<\/strong><\/p>\n\n\n\n

Dosud v\u00a0r\u00e1mci sb\u00edrky Danielovi podporovatel\u00e9 poslali p\u0159es 72 tis\u00edc korun, tedy p\u0159ibli\u017en\u011b 2 800 eur. Do vyty\u010den\u00e9ho c\u00edle mu tak je\u0161t\u011b zb\u00fdv\u00e1 1 200 eur. Kdo jej chce v\u00a0jeho \u00fasil\u00ed je\u0161t\u011b podpo\u0159it, m\u016f\u017ee poslat p\u0159\u00edsp\u011bvek na \u00fa\u010det \u010cesk\u00e9ho svazu hemofilik\u016f, \u010d.\u00a0\u00fa. 2109200873\/2700, a do zpr\u00e1vy napsat Mont Blanc, p\u0159\u00edpadn\u011b vyu\u017e\u00edt QR k\u00f3d, kter\u00fd je k\u00a0dispozici zde<\/a>. <\/em><\/p>\n\n\n\n

\u201eSt\u00e1le v\u00edce si uv\u011bdomuji, \u017ee v\u00fdstup na Mont Blanc rozhodn\u011b nebude \u017e\u00e1dn\u00e1 legrace, a proto se sna\u017e\u00edm u\u017e dva m\u011bs\u00edce poctiv\u011b budovat kondici. Zat\u00edm hodn\u011b b\u011bh\u00e1m a plavu, s\u00a0hezk\u00fdm po\u010das\u00edm ur\u010dit\u011b vyt\u00e1hnu kolo. M\u00e1m v\u00a0pl\u00e1nu tak\u00e9 podniknout n\u011bjak\u00e9 v\u00fd\u0161lapy, i kdy\u017e ur\u010dit\u011b ne na tak vysok\u00e9 hory. Sb\u00edr\u00e1m tak\u00e9 informace o horolezectv\u00ed, kter\u00e9mu jsem se dosud nev\u011bnoval,\u201c <\/em>\u0159\u00edk\u00e1 Daniel \u0160imek, student Matematicko-fyzik\u00e1ln\u00ed fakulty Univerzity Karlovy.<\/p>\n\n\n\n

Je jedn\u00edm z\u00a0asi tis\u00edce lid\u00ed v \u010cesku, kte\u0159\u00ed hemofili\u00ed trp\u00ed. Tuto vrozenou chorobu charakterizuje nedostatek tzv.\u00a0koagula\u010dn\u00edho faktoru, v\u00a0d\u016fsledku \u010deho\u017e se hemofilik\u016fm nesr\u00e1\u017e\u00ed krev a zp\u016fsobuje jim krv\u00e1cen\u00ed, nap\u0159\u00edklad do kloub\u016f \u010di sval\u016f. O v\u00fdstup se mlad\u00fd student pokus\u00ed jako \u010dlen skupiny dev\u00edti hemofilik\u016f z\u00a0cel\u00e9ho sv\u011bta veden\u00e9 horolezcem a z\u00e1rove\u0148 hemofilikem Chrisem Bombardierem. Ten jako prvn\u00ed s\u00a0touto nemoc\u00ed zdolal tzv.\u00a0Koruny planety. P\u0159i sv\u00fdch v\u00fdstupech se rozhodl zalo\u017eit organizaci Save One Life.<\/a><\/p>\n\n\n\n

\u201eK akci m\u011b p\u0159izval s\u00e1m Chris. Projekt pom\u00e1h\u00e1 hemofilik\u016fm v\u00a0rozvojov\u00fdch zem\u00edch, tak\u017ee jsem r\u00e1d, \u017ee krom\u011b zdol\u00e1n\u00ed hory mohu tak\u00e9 pomoci hemofilik\u016fm, jako jsem j\u00e1. A to v\u00a0zem\u00edch, kde nemaj\u00ed to \u0161t\u011bst\u00ed na stejn\u011b dostupnou l\u00e9\u010dbu jako v\u00a0\u010cesk\u00e9 republice,\u201c<\/em> \u0159\u00edk\u00e1 \u0160imek, kter\u00fd reprezentuje pacientskou organizaci \u010cesk\u00fd svaz hemofilik\u016f a Hemojunior. D\u00edky n\u00ed ponese na vrchol symbolicky i dal\u0161\u00ed hemofiliky z\u00a0\u010ceska. \u201ePl\u00e1nujeme Dana vybavit trikem nebo kusem l\u00e1tky, na kter\u00e9m budou nati\u0161t\u011bn\u00e9 vzkazy ostatn\u00edch hemofilik\u016f a podporovatel\u016f, kte\u0159\u00ed mu v\u00a0jeho cest\u011b dr\u017e\u00ed palce. T\u00edm zp\u016fsobem s\u00a0n\u00edm budou na cest\u011b tak\u00e9, alespo\u0148 takto na d\u00e1lku,\u201c<\/em> \u0159\u00edk\u00e1 Martin Boh\u016fn, p\u0159edseda \u010cesk\u00e9ho svazu hemofilik\u016f.<\/p>\n\n\n\n

Danovo po\u010d\u00edn\u00e1n\u00ed bud\u00ed obdiv i u l\u00e9ka\u0159\u016f, kte\u0159\u00ed hemofilii l\u00e9\u010d\u00ed. \u201eD\u0159\u00edve se hemofilik\u016fm sportov\u00e1n\u00ed nedoporu\u010dovalo, hlavn\u011b z\u00a0d\u016fvodu rizika spont\u00e1nn\u00edho krv\u00e1cen\u00ed nebo \u00farazu. D\u00edky profylaktick\u00e9 l\u00e9\u010db\u011b u\u017e ale m\u016f\u017eeme sr\u00e1\u017elivost krve upravit tak, \u017ee sport nep\u0159edstavuje z\u00e1sadn\u00ed probl\u00e9m. Doporu\u010dujeme ale nekontaktn\u00ed sporty, jako je cyklistika, plav\u00e1n\u00ed nebo b\u011bh,\u201c<\/em> \u0159\u00edk\u00e1 MUDr. Sv\u011btlana K\u00f6hlerov\u00e1 z\u00a0Odd\u011blen\u00ed d\u011btsk\u00e9 hematologie Fakultn\u00ed nemocnice Brno, kter\u00e1 o Daniela pe\u010dovala v d\u011btstv\u00ed. Jeho p\u0159\u00edpad je podle l\u00e9ka\u0159ky specifick\u00fd, proto\u017ee trp\u00ed t\u011b\u017ekou formou hemofilie. P\u0159esto jej rodi\u010de odmali\u010dka k\u00a0pohybu vedli. To Danielovi nyn\u00ed v\u00fdrazn\u011b pom\u016f\u017ee i p\u0159i v\u00fdstupu na Mont Blanc. <\/p>\n\n\n\n

\u201ePodobn\u00fd v\u00fdstup bude pro hemofilika v\u017edy spojen\u00fd s v\u00fdrazn\u011b\u00a0vy\u0161\u0161\u00edm zdravotn\u00edm rizikem ne\u017e pro zdrav\u00e9ho \u010dlov\u011bka, p\u0159esto\u017ee m\u00e1 nasazenou nejmodern\u011bj\u0161\u00ed faktorovou l\u00e9\u010dbu. Daniel m\u00e1 velkou v\u00fdhodu v\u00a0tom, \u017ee je zvykl\u00fd sportovat, je osvalen\u00fd a to chr\u00e1n\u00ed jeho klouby a t\u011blo p\u0159ed zran\u011bn\u00edm a potenci\u00e1ln\u00edm krv\u00e1cen\u00edm. Nav\u00edc v\u017edy sv\u011bdomit\u011b dodr\u017eoval l\u00e9\u010dbu, a d\u00edky tomu jsou jeho klouby ve velmi dobr\u00e9 kondici,\u201c <\/em>\u0159\u00edk\u00e1 Daniel\u016fv sou\u010dasn\u00fd l\u00e9ka\u0159 MUDr. Petr Smejkal z\u00a0Odd\u011blen\u00ed klinick\u00e9 hematologie Fakultn\u00ed nemocnice Brno. <\/p>\n\n\n\n

Podobn\u00fd v\u00fdstup je podle n\u011bj pro hemofilika mo\u017en\u00fd pouze d\u00edky pokroku v l\u00e9\u010db\u011b. Je\u0161t\u011b na za\u010d\u00e1tku 90.\u00a0let by byl nemysliteln\u00fd. Pacienti s\u00a0hemofili\u00ed nem\u011bli k\u00a0dispozici profylaktickou l\u00e9\u010dbu, tak\u017ee \u010delili i\u00a0n\u011bkolika krv\u00e1cen\u00edm do kloub\u016f ro\u010dn\u011b. To vedlo k nevratn\u00e9mu po\u0161kozen\u00ed kloub\u016f a \u010dasto k invalidit\u011b. \u201eDnes si pacienti odmali\u010dka nitro\u017eiln\u011b dopl\u0148uj\u00ed koagula\u010dn\u00ed (sr\u00e1\u017eec\u00ed) faktor, p\u0159\u00edpadn\u011b dost\u00e1vaj\u00ed tzv.\u00a0nefaktorovou l\u00e9\u010dbu. Oba zp\u016fsoby l\u00e9\u010dby hemofilie pak velmi \u00fa\u010dinn\u011b zlep\u0161uj\u00ed sr\u00e1\u017elivost krve, aby nedoch\u00e1zelo ke spont\u00e1nn\u00edm krv\u00e1cen\u00edm,\u201c<\/em> vysv\u011btluje MUDr. Smejkal.<\/p>\n\n\n\n

Daniel\u016fv p\u0159\u00edklad m\u016f\u017ee tak\u00e9 inspirovat mlad\u0161\u00ed generaci nemocn\u00fdch. \u201eJe \u00fa\u017easn\u00e9 vid\u011bt, kam jsme se d\u00edky l\u00e9\u010db\u011b za posledn\u00ed roky posunuli. Ukazuje se, jak je pro d\u00edt\u011b s hemofili\u00ed a celou jeho rodinu d\u016fle\u017eit\u00e1 motivace l\u00e9\u010dbu dodr\u017eovat. P\u0159esto\u017ee se jedn\u00e1 o nitro\u017eiln\u00ed nebo podko\u017en\u00ed aplikaci l\u00e9k\u016f, kter\u00e1 nen\u00ed nikomu p\u0159\u00edjemn\u00e1, mohou d\u00edky n\u00ed hemofilici d\u011blat prakticky cokoliv,\u201c <\/em>\u0159\u00edk\u00e1 Kate\u0159ina Altmanov\u00e1, p\u0159edsedkyn\u011b pacientsk\u00e9 organizace Hemojunior. P\u0159\u00edb\u011bh podle n\u00ed tak\u00e9 povzbud\u00ed rodi\u010de hemofilik\u016f nebo ty, kte\u0159\u00ed o zalo\u017een\u00ed rodiny teprve uva\u017euj\u00ed a v\u00e1haj\u00ed pr\u00e1v\u011b z d\u016fvodu, \u017ee mohou b\u00fdt p\u0159ena\u0161e\u010di choroby.<\/p>\n\n\n\n

O hemofilii<\/strong> <\/p>\n\n\n\n

Hemofilie je vz\u00e1cn\u00e9 vrozen\u00e9 onemocn\u011bn\u00ed zp\u016fsoben\u00e9 nedostatkem koagula\u010dn\u00edho (sr\u00e1\u017eec\u00edho) faktoru VIII (hemofilie A), resp. IX (hemofilie B). Projevuje se nedostate\u010dnou krevn\u00ed sr\u00e1\u017elivost\u00ed. V \u010cR \u017eije p\u0159ibli\u017en\u011b 1 000 pacient\u016f s hemofili\u00ed, 38 % z nich m\u00e1 t\u011b\u017ekou formu nemoci. Hemofilie se v sou\u010dasn\u00e9 dob\u011b l\u00e9\u010d\u00ed pod\u00e1v\u00e1n\u00edm chyb\u011bj\u00edc\u00edho sr\u00e1\u017eec\u00edho faktoru p\u0159\u00edmo do krve nebo pomoc\u00ed tzv. nefaktorov\u00e9 l\u00e9\u010dby. Preventivn\u00ed pod\u00e1v\u00e1n\u00ed l\u00e9\u010dby (tzv. profylaxe) pom\u00e1h\u00e1 p\u0159edch\u00e1zet mimo jin\u00e9 spont\u00e1nn\u00edmu krv\u00e1cen\u00ed do kloub\u016f, kter\u00e9 je b\u011b\u017en\u00e9 u t\u011b\u017ek\u00fdch forem hemofilie. Opakovan\u00e9 krv\u00e1cen\u00ed kloub v\u00e1\u017en\u011b po\u0161kozuje a bez rychl\u00e9 a \u00fa\u010dinn\u00e9 l\u00e9\u010dby se rozv\u00edjej\u00ed t\u011b\u017ek\u00e9 kloubn\u00ed zm\u011bny, kter\u00e9 mohou v\u00e9st a\u017e k trval\u00e9 invalidit\u011b.<\/p>\n\n\n\n

O sdru\u017een\u00ed Hemojunior <\/strong> <\/p>\n\n\n\n

Hemojunior, z.s., je dobrovolnou neprofesion\u00e1ln\u00ed organizac\u00ed sdru\u017euj\u00edc\u00ed sv\u00e9 \u010dleny z \u0159ad ob\u010dan\u016f bez rozd\u00edlu v\u011bku, n\u00e1rodnosti, v\u00edry, profese \u010di spole\u010densk\u00e9ho postaven\u00ed, kte\u0159\u00ed se cht\u011bj\u00ed aktivn\u011b pod\u00edlet na pomoci rodin\u00e1m s d\u011btmi s hemofili\u00ed a von Willebrandovou chorobou. Vzniklo z iniciativy rodi\u010d\u016f v listopadu 2001. Spolupracuje s \u010cesk\u00fdm svazem hemofilik\u016f. V\u00edce na www.hemojunior.cz<\/em><\/a>.  <\/p>\n\n\n\n

O \u010cesk\u00e9m svazu hemofilik\u016f<\/strong> <\/p>\n\n\n\n

\u010cesk\u00fd svaz hemofilik\u016f, z.s., je dobrovoln\u00fd spolek osob s hemofili\u00ed a von Willebrandovou chorobou. Byl zalo\u017een v roce 1990. Zast\u00e1v\u00e1 z\u00e1jmy nemocn\u00fdch a v\u0161emo\u017en\u011b jim pom\u00e1h\u00e1 zvl\u00e1dat nep\u0159\u00edzniv\u00fd osud. Hlavn\u00ed snahou cel\u00e9ho svazu je p\u0159ipravit v\u0161em \u010dlen\u016fm podm\u00ednky pro co nejv\u011bt\u0161\u00ed zkvalitn\u011bn\u00ed \u017eivota, podporovat z\u00e1jmy cel\u00e9 komunity lid\u00ed s poruchami sr\u00e1\u017elivosti krve a umo\u017enit jim pln\u00e9 za\u010dlen\u011bn\u00ed do b\u011b\u017en\u00e9ho \u017eivota. Jeho \u010dleny jsou nejen sami nemocn\u00ed, ale tak\u00e9 jejich rodinn\u00ed p\u0159\u00edslu\u0161n\u00edci, p\u0159\u00e1tel\u00e9, l\u00e9ka\u0159i a dal\u0161\u00ed zdravotn\u00edci, p\u0159\u00edpadn\u011b p\u0159\u00edznivci svazu. \u010cesk\u00fd svaz hemofilik\u016f (\u010cSH) je \u010dlenem Sv\u011btov\u00e9 federace hemofilie (WFH), Evropsk\u00e9ho hemofilick\u00e9ho konsorcia (EHC) a \u010cesk\u00e9ho n\u00e1rodn\u00edho hemofilick\u00e9ho programu (\u010cNHP). Spolupracuje se sdru\u017een\u00edm Hemojunior a v rozhoduj\u00edc\u00edch ot\u00e1zk\u00e1ch postupuj\u00ed spole\u010dn\u011b. V\u00edce na www.hemofilici.cz<\/em><\/a>.  <\/p>\n","protected":false},"excerpt":{"rendered":"

\u010cervenec se kvapem bl\u00ed\u017e\u00ed a kr\u00e1t\u00ed se i \u010das na p\u0159\u00edpravu t\u0159iadvacetilet\u00e9ho Daniela \u0160imka. Ten se jako prvn\u00ed \u010cech s hemofili\u00ed pokus\u00ed v\u00a0\u010dervenci zdolat nejvy\u0161\u0161\u00ed […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":45766,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-47944","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\/47944","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=47944"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/47944\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/45766"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47944"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47944"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47944"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}