{"id":45761,"date":"2024-02-06T12:00:20","date_gmt":"2024-02-06T11:00:20","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=45761"},"modified":"2024-02-06T12:00:21","modified_gmt":"2024-02-06T11:00:21","slug":"spatne-se-mu-srazi-krev-presto-planuje-zdolat-mont-blanc","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=45761","title":{"rendered":"\u0160patn\u011b se mu sr\u00e1\u017e\u00ed krev, p\u0159esto pl\u00e1nuje zdolat Mont Blanc"},"content":{"rendered":"\n<p><em>Pokud se mu poda\u0159\u00ed nasb\u00edrat dost pen\u011bz, podpo\u0159\u00ed dal\u0161\u00ed nemocn\u00e9<\/em><\/p>\n\n\n\n<p><strong>T\u0159iadvacetilet\u00fd Daniel \u0160imek se jako prvn\u00ed \u010desk\u00fd hemofilik pokus\u00ed v\u00a0\u010dervenci zdolat vrchol nejvy\u0161\u0161\u00ed hory Alp Mont Blanc (4 807,81 m n. m.). P\u0159esto\u017ee trp\u00ed poruchou sr\u00e1\u017elivosti krve, chce zdolat horu, na kterou by si netroufl leckter\u00fd zdrav\u00fd \u010dlov\u011bk. Hemofilie \u2013 vrozen\u00e1\u00a0nemoc \u2013 p\u0159itom je\u0161t\u011b p\u0159ed 30 lety b\u011b\u017en\u011b pacienty sm\u011brovala k\u00a0invalidit\u011b. <\/strong><\/p>\n\n\n\n<p><strong>D\u00edky modern\u00ed\u00a0l\u00e9\u010db\u011b se v\u0161ak m\u016f\u017ee Daniel \u0160imek na za\u010d\u00e1tku \u010dervence p\u0159ipojit k dal\u0161\u00edm osmi lezc\u016fm-hemofilik\u016fm. Sv\u00fdm v\u00fdstupem podpo\u0159\u00ed mezin\u00e1rodn\u00ed projekt <\/strong><a href=\"https:\/\/saveonelife.net\/montblanc2024\"><strong>Save One Life<\/strong><\/a><strong>, jeho\u017e c\u00edlem je pom\u00e1hat pacient\u016fm s\u00a0hemofili\u00ed v\u00a0m\u00e9n\u011b rozvinut\u00fdch zem\u00edch sv\u011bta. \u00da\u010dast na\u00a0expedici je ale podm\u00edn\u011bna t\u00edm, \u017ee na ni student vybere 4 000 eur \u2013 ty poputuj\u00ed p\u0159\u00edmo k\u00a0lidem s\u00a0hemofili\u00ed na \u00fahradu jejich l\u00e9\u010dby.<\/strong><\/p>\n\n\n\n<p>Kdo chce Daniela v\u00a0jeho \u00fasil\u00ed podpo\u0159it, m\u016f\u017ee pos\u00edlat p\u0159\u00edsp\u011bvky na \u00fa\u010det \u010cesk\u00e9ho svazu hemofilik\u016f, \u010d.\u00a0\u00fa. 2109200873\/2700, a do zpr\u00e1vy napsat Mont Blanc, p\u0159\u00edpadn\u011b pomoc\u00ed QR k\u00f3du, kter\u00fd je k\u00a0<a href=\"https:\/\/res.cloudinary.com\/hemofilici-cz\/image\/upload\/v1707078477\/fotografie-do-clanku\/mt%20blanc\/qr_ufsy9q.jpg\">dispozici zde<\/a>.<em> \u201eV\u00fdstup na Mont Blanc je to pro m\u011b dal\u0161\u00ed v\u00fdzvou, kterou chci poko\u0159it. Hory nejsou m\u016fj hlavn\u00ed kon\u00ed\u010dek a jsem si v\u011bdom, \u017ee v\u00fdstup nebude jednoduch\u00fd, i proto nesm\u00edm podcenit p\u0159\u00edpravu. P\u0159i studiu vysok\u00e9 \u0161koly \u0161el sport tro\u0161ku stranou, tak\u017ee se te\u010f sna\u017e\u00edm dostat do kondice \u2013 b\u011bh\u00e1m, plavu. P\u0159ed samotn\u00fdm v\u00fdstupem budeme m\u00edt t\u0159i dny na p\u0159\u00edpravu, mus\u00edme se adaptovat na m\u00edstn\u00ed podm\u00ednky,\u201c <\/em>\u0159\u00edk\u00e1 Daniel \u0160imek, student Matematicko-fyzik\u00e1ln\u00ed fakulty Univerzity Karlovy. 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, tak\u017ee se krev nesr\u00e1\u017e\u00ed a pacient\u016fm zp\u016fsobuje spont\u00e1nn\u00ed krv\u00e1cen\u00ed, nap\u0159\u00edklad do kloub\u016f. <\/p>\n\n\n\n<p>O v\u00fdstup se mlad\u00fd student pokus\u00ed jako \u010dlen skupiny dev\u00edti hemofilik\u016f z\u00a0cel\u00e9ho sv\u011bta, veden\u00e9 horolezcem Chrisem Bombardierem. Ten jako prvn\u00ed hemofilik na sv\u011bt\u011b zdolal tzv.\u00a0Korunu planety neboli sedm nejvy\u0161\u0161\u00edch vrchol\u016f jednotliv\u00fdch kontinent\u016f. <em>\u201eK projektu m\u011b p\u0159izval s\u00e1m Chris, kter\u00fd vede organizaci Save One Life. Ta 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 pacient\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.<\/p>\n\n\n\n<p>Danovo po\u010d\u00edn\u00e1n\u00ed bud\u00ed obdiv i u l\u00e9ka\u0159\u016f, kte\u0159\u00ed hemofilii l\u00e9\u010d\u00ed. <em>\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<p> <em>\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. 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. <em>\u201eDnes si pacienti od mali\u010dka nitro\u017eiln\u011b dopl\u0148uj\u00ed koagula\u010dn\u00ed (sr\u00e1\u017eliv\u00fd) faktor, p\u0159\u00edpadn\u011b dost\u00e1vaj\u00ed tzv. nefaktorovou 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<p>Daniel\u016fv p\u0159\u00edklad m\u016f\u017ee tak\u00e9 inspirovat mlad\u0161\u00ed generaci nemocn\u00fdch. <em>\u201eDaniel v\u0161em ukazuje, \u017ee pacienti s hemofili\u00ed mohou \u017e\u00edt plnohodnotn\u00fd \u017eivot bez v\u00fdrazn\u00fdch omezen\u00ed. Sta\u010d\u00ed, kdy\u017e k\u00a0l\u00e9\u010db\u011b p\u0159istupuj\u00ed zodpov\u011bdn\u011b,\u201c<\/em> \u0159\u00edk\u00e1 Martin Boh\u016fn, p\u0159edseda \u010cesk\u00e9ho svazu hemofilik\u016f, kter\u00fd Daniela na jeho cest\u011b podporuje. P\u0159\u00edb\u011bh podle n\u011bj 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\u00a0d\u016fvodu, \u017ee mohou b\u00fdt p\u0159ena\u0161e\u010di choroby. <\/p>\n\n\n\n<p><em>\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\u00a0hemofili\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, d\u00edky n\u00ed mohou hemofilici d\u011blat prakticky cokoliv,\u201c <\/em>\u0159\u00edk\u00e1 Kate\u0159ina Altmanov\u00e1, p\u0159edsedkyn\u011b pacientsk\u00e9 organizace Hemojunior. To ostatn\u011b potvrzuje i Daniel \u0160imek. \u201e<em>Hemofilii beru jako svou ned\u00edlnou sou\u010d\u00e1st. Nau\u010dila m\u011b v\u00e1\u017eit si v\u0161eho, co m\u00e1m. Kdy\u017e se ohl\u00e9dnu zp\u011bt, tak si mysl\u00edm, \u017ee mi dala v\u00edc, ne\u017e mi vzala. Beru ji jako svoji superschopnost,\u201c <\/em>uzav\u00edr\u00e1.<\/p>\n\n\n\n<p><strong>O hemofilii<\/strong>&nbsp;<\/p>\n\n\n\n<p>Hemofilie je vz\u00e1cn\u00e9 a 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<p><strong>O sdru\u017een\u00ed Hemojunior&nbsp;<\/strong>&nbsp;<\/p>\n\n\n\n<p>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&nbsp;d\u011btmi s&nbsp;hemofili\u00ed a von Willebrandovou chorobou. Vzniklo z iniciativy rodi\u010d\u016f v listopadu 2001. Spolupracuje s&nbsp;\u010cesk\u00fdm svazem hemofilik\u016f. V\u00edce na <a href=\"http:\/\/www.hemojunior.cz\/\" target=\"_blank\" rel=\"noreferrer noopener\"><em>www.hemojunior.cz<\/em><\/a>.&nbsp;&nbsp;<\/p>\n\n\n\n<p><strong>O \u010cesk\u00e9m svazu hemofilik\u016f<\/strong>&nbsp;<\/p>\n\n\n\n<p>\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, zast\u00e1vat 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. Jej\u00edmi \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 <a href=\"http:\/\/www.hemofilici.cz\/\" target=\"_blank\" rel=\"noreferrer noopener\"><em>www.hemofilici.cz<\/em><\/a>.&nbsp;&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Pokud se mu poda\u0159\u00ed nasb\u00edrat dost pen\u011bz, podpo\u0159\u00ed dal\u0161\u00ed nemocn\u00e9 T\u0159iadvacetilet\u00fd Daniel \u0160imek se jako prvn\u00ed \u010desk\u00fd hemofilik pokus\u00ed v\u00a0\u010dervenci zdolat vrchol nejvy\u0161\u0161\u00ed hory Alp <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=45761\" title=\"\u0160patn\u011b se mu sr\u00e1\u017e\u00ed krev, p\u0159esto pl\u00e1nuje zdolat Mont Blanc\">[&#8230;]<\/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-45761","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\/45761","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=45761"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/45761\/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=45761"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=45761"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=45761"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}