{"id":56296,"date":"2025-04-10T07:44:50","date_gmt":"2025-04-10T05:44:50","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=56296"},"modified":"2025-04-10T07:46:07","modified_gmt":"2025-04-10T05:46:07","slug":"lide-s-hemofilii-uz-mohou-to-co-bylo-drive-nemyslitelne-maji-zakazane-jen-bojove-a-kontaktni-sporty","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=56296","title":{"rendered":"Lid\u00e9 s\u00a0hemofili\u00ed u\u017e mohou to, co bylo d\u0159\u00edve nemysliteln\u00e9. Bojov\u00e9 a kontaktn\u00ed sporty ale maj\u00ed nad\u00e1le zak\u00e1zan\u00e9"},"content":{"rendered":"\n

Umo\u017enila to preventivn\u00ed l\u00e9\u010dba<\/em><\/p>\n\n\n\n

Praha, 9. 4. 2025 \u2013 P\u0159ibli\u017en\u011b tis\u00edc lid\u00ed v \u010cesku \u017eije s hemofili\u00ed. Vrozen\u00e1 porucha sr\u00e1\u017elivosti krve jim zp\u016fsobuje samovoln\u00e1 krv\u00e1cen\u00ed, nej\u010dast\u011bji do sval\u016f nebo kloub\u016f. Je\u0161t\u011b p\u0159ed 30 lety onemocn\u011bn\u00ed b\u011b\u017en\u011b vedlo ke ztr\u00e1t\u011b pohyblivosti. Dnes u\u017e to ale neplat\u00ed. D\u00edky sou\u010dasn\u00fdm mo\u017enostem l\u00e9\u010dby dok\u00e1\u017eou pacienti spont\u00e1nn\u00edm krv\u00e1cen\u00edm p\u0159edch\u00e1zet. V\u011bnovat se tak mohou stejn\u00fdm aktivit\u00e1m jako zdrav\u00ed lid\u00e9, v\u00fdrazn\u011b omezovat se nemus\u00ed ani ve sportu. Odborn\u00edci to p\u0159ipom\u00ednaj\u00ed u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne hemofilie, kter\u00fd p\u0159ipad\u00e1 na 17. dubna.<\/strong><\/p>\n\n\n\n

\u201eHemofilie je d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, kter\u00e9 se v\u00e1\u017ee na chromozom X. Postihuje zejm\u00e9na mu\u017ee, \u017eeny b\u00fdvaj\u00ed p\u0159ena\u0161e\u010dkami. Lid\u00e9 s poruchou sr\u00e1\u017elivosti krve se pot\u00fdkaj\u00ed s nedostatkem tzv. koagula\u010dn\u00edho faktoru, kv\u016fli kter\u00e9mu se u nich spou\u0161t\u00ed samovoln\u00e9 krv\u00e1cen\u00ed do sval\u016f nebo kloub\u016f,\u201c <\/em>popisuje MUDr. Eva Drbohlavov\u00e1 z Centra klinick\u00e9 hematologie Krajsk\u00e9 nemocnice Liberec. Pr\u00e1v\u011b spont\u00e1nn\u00ed krv\u00e1cen\u00ed d\u0159\u00edve vedlo a\u017e k invalidit\u011b. \u201eOpakovan\u00e9 krv\u00e1cen\u00ed kloub v\u00e1\u017en\u011b po\u0161kozuje. V d\u016fsledku rozs\u00e1hl\u00fdch zm\u011bn tak doch\u00e1zelo ke ztr\u00e1t\u011b pohyblivosti,\u201c<\/em> \u0159\u00edk\u00e1 l\u00e9ka\u0159ka.<\/p>\n\n\n\n

Zm\u011bnu v \u017eivot\u011b hemofilik\u016f p\u0159inesla a\u017e tzv. profylaktick\u00e1 l\u00e9\u010dba. D\u00edky n\u00ed dnes pacienti dok\u00e1\u017eou samovoln\u00fdm krv\u00e1cen\u00edm p\u0159edch\u00e1zet. \u201eMlad\u00ed lid\u00e9 s hemofili\u00ed u\u017e krv\u00e1cen\u00ed do kloub\u016f neznaj\u00ed. Nemus\u00ed se pot\u00fdkat s omezen\u00edmi, kter\u00fdm \u010delily star\u0161\u00ed generace. Mohou \u017e\u00edt naplno, v\u011bnovat se pr\u00e1ci, rodin\u011b, kon\u00ed\u010dk\u016fm i pohybu, jen s v\u00fdjimkou bojov\u00fdch um\u011bn\u00ed, kontaktn\u00edch sport\u016f nebo sk\u00e1k\u00e1n\u00ed na trampol\u00edn\u011b,\u201c<\/em> p\u0159ibli\u017euje MUDr. Drbohlavov\u00e1.<\/p>\n\n\n\n

Posun v l\u00e9\u010db\u011b p\u0159ich\u00e1zel postupn\u011b. \u201eV minulosti ji pacienti dost\u00e1vali v nemocnici a\u017e ve chv\u00edli, kdy u\u017e krv\u00e1cen\u00ed nastalo. Dnes m\u016f\u017eeme terapii pod\u00e1vat preventivn\u011b, \u010d\u00edm\u017e vzniku krv\u00e1cen\u00ed p\u0159edch\u00e1z\u00edme. L\u00e9ky, kter\u00e9 pacient\u016fm nab\u00edz\u00edme dnes, jsou velmi \u00fa\u010dinn\u00e9. Zejm\u00e9na nejnov\u011bj\u0161\u00ed l\u00e9ky, kter\u00e9 m\u00e1me k dispozici posledn\u00edch n\u011bkolik let, znamenaly pro mnoh\u00e9 nemocn\u00e9 velkou zm\u011bnu \u2013 pokud jde o zjednodu\u0161en\u00ed pod\u00e1v\u00e1n\u00ed, ale i s ohledem na vy\u0161\u0161\u00ed ochranu p\u0159ed krv\u00e1cen\u00edm,\u201c <\/em>uv\u00e1d\u00edMUDr. Ester Z\u00e1potock\u00e1 z Kliniky d\u011btsk\u00e9 hematologie a onkologie 2. LF UK a FN Motol.<\/p>\n\n\n\n

Krom\u011b l\u00e9\u010dby pom\u00e1h\u00e1 hemofilik\u016fm v ka\u017edodenn\u00edm \u017eivot\u011b tak\u00e9 fyzioterapie. \u201eM\u00e1 vynikaj\u00edc\u00ed dopad na kloubn\u00ed apar\u00e1t. Zejm\u00e9na u star\u0161\u00ed generace hemofilik\u016f, kte\u0159\u00ed maj\u00ed n\u011bjakou m\u00edru po\u0161kozen\u00ed kloub\u016f, nejsou tak aktivn\u00ed a musej\u00ed se spol\u00e9hat na kompenza\u010dn\u00ed pom\u016fcky, je t\u0159eba pohybov\u00e9 aktivity volit individu\u00e1ln\u011b. Nau\u010d\u00ed se t\u0159eba, jak cvi\u010dit i v dom\u00e1c\u00edm prost\u0159ed\u00ed,\u201c<\/em> vysv\u011btluje Martin Boh\u016fn, p\u0159edseda \u010cesk\u00e9ho svazu hemofilik\u016f, kter\u00fd s\u00e1m s nemoc\u00ed \u017eije. D\u00edky fyzioterapii nemusel doposud podstoupit \u017e\u00e1dn\u00fd ortopedick\u00fd z\u00e1krok. \u201eAby byla fyzioterapie \u00fa\u010dinn\u00e1, mus\u00ed m\u00edt ale pacient z\u00e1jem se o sv\u00e9 t\u011blo starat,\u201c <\/em>dopl\u0148uje Boh\u016fn.<\/p>\n\n\n\n

U p\u0159\u00edle\u017eitosti sv\u011btov\u00e9ho dne hemofilie chyst\u00e1 \u010cesk\u00fd svaz hemofilik\u016f n\u011bkolik akc\u00ed. \u201eChceme p\u0159ipomenout, \u017ee lid\u00e9 s poruchou sr\u00e1\u017elivosti krve dnes mohou \u017e\u00edt plnohodnotn\u00fd \u017eivot. Pokud k l\u00e9\u010db\u011b a ke sv\u00e9mu t\u011blu p\u0159istupuj\u00ed zodpov\u011bdn\u011b, mohou dosahovat i t\u011bch nejvy\u0161\u0161\u00edch c\u00edl\u016f, a to v ka\u017ed\u00e9m v\u011bku,\u201c<\/em> \u0159\u00edk\u00e1 Boh\u016fn.<\/p>\n\n\n\n

V\u00a0polovin\u011b dubna se \u010dlenov\u00e9 svazu, jejich rodiny a dal\u0161\u00ed podporovatel\u00e9 chystaj\u00ed vystoupit na Je\u0161t\u011bd. Navazuj\u00ed tak na lo\u0148skou mezin\u00e1rodn\u00ed expedici, p\u0159i n\u00ed\u017e se Daniel \u0160imek jako prvn\u00ed \u010cech s\u00a0hemofili\u00ed pokusil zdolat nejvy\u0161\u0161\u00ed vrchol Alp \u2013 Mont Blanc. \u201eKa\u017ed\u00fd m\u00e1me sv\u016fj Mont Blanc. A nemus\u00edme p\u0159itom p\u0159ekon\u00e1vat nejvy\u0161\u0161\u00ed horu Evropy. Mysl\u00edm, \u017ee u\u017e jenom to, \u017ee \u010dlov\u011bk dok\u00e1\u017ee r\u00e1no vst\u00e1t a vyl\u00e9zt t\u0159eba na vrchol Je\u0161t\u011bdu, pro n\u011bj bude z\u00e1\u017eitek a hlavn\u011b motivace k\u00a0dal\u0161\u00edm aktivit\u00e1m,\u201c<\/em> \u0159\u00edk\u00e1 Daniel \u0160imek, kter\u00fd se dubnov\u00e9ho v\u00fdstupu z\u00fa\u010dastn\u00ed s\u00a0celou rodinou. V\u00fdzvou pro hemofiliky v\u0161ak podle n\u011bj nemus\u00ed b\u00fdt jen sportovn\u00ed v\u00fdkony. \u201eSvou cestou na Mont Blanc jsem cht\u011bl uk\u00e1zat, \u017ee i s\u00a0v\u00e1\u017en\u00fdm onemocn\u011bn\u00edm, jak\u00fdm hemofilie je, lze dos\u00e1hnout \u010dehokoliv, a\u0165 u\u017e je to zdol\u00e1n\u00ed vrcholu hory, nebo cesta do zahrani\u010d\u00ed, zaj\u00edmav\u00e9 zam\u011bstn\u00e1n\u00ed \u010di zalo\u017een\u00ed rodiny<\/em>.\u201c<\/em> Na v\u00fdstup se chyst\u00e1 tak\u00e9 \u0159ada rodin d\u011bt\u00ed s\u00a0hemofili\u00ed, kter\u00e9 se zapojuj\u00ed do \u010dinnosti organizace Hemojunior. \u201eZ p\u0159edchoz\u00edch akc\u00ed v\u00edme, jak skv\u011ble funguje propojen\u00ed mlad\u0161\u00edch a star\u0161\u00edch generac\u00ed, a v\u0161echny aktivity u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne hemofilie jsou skv\u011blou mo\u017enost\u00ed, jak se potkat v\u00a0r\u00e1mci komunity,\u201c <\/em>\u0159\u00edk\u00e1 Kate\u0159ina Altmanov\u00e1, p\u0159edsedkyn\u011b organizace Hemojunior. <\/p>\n\n\n\n

V\u00a0pr\u016fb\u011bhu roku sdru\u017een\u00ed p\u0159ipravuje r\u016fzn\u00e9 rekondi\u010dn\u011b eduka\u010dn\u00ed pobyty, na kter\u00fdch mohou rodiny d\u011bt\u00ed sd\u00edlet sv\u00e9 zku\u0161enosti ze \u017eivota s\u00a0t\u00edmto onemocn\u011bn\u00edm a\u00a0vyzkou\u0161et si r\u016fzn\u00e9 pohybov\u00e9 aktivity.<\/p>\n\n\n\n

V r\u00e1mci Sv\u011btov\u00e9ho dne hemofilie se tak\u00e9 \u0159ada m\u011bst v \u010cesku rozz\u00e1\u0159\u00ed \u010dervenou barvou. Symbolicky se rozsv\u00edt\u00ed nap\u0159\u00edklad Praha, Ostrava, Olomouc, Plze\u0148, Liberec, Opava, N\u00e1chod, Hranice na Morav\u011b, Nymburk, Jarom\u011b\u0159, Humpolec a Brand\u00fds nad Labem.<\/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 preventivn\u00edch l\u00e9k\u016f (tzv. profylaxe), kter\u00e9 pom\u00e1haj\u00ed p\u0159edch\u00e1zet mimo jin\u00e9 spont\u00e1nn\u00edmu krv\u00e1cen\u00ed do kloub\u016f, je\u017e 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 \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\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","protected":false},"excerpt":{"rendered":"

Umo\u017enila to preventivn\u00ed l\u00e9\u010dba Praha, 9. 4. 2025 \u2013 P\u0159ibli\u017en\u011b tis\u00edc lid\u00ed v \u010cesku \u017eije s hemofili\u00ed. Vrozen\u00e1 porucha sr\u00e1\u017elivosti krve jim zp\u016fsobuje samovoln\u00e1 krv\u00e1cen\u00ed, nej\u010dast\u011bji […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":21719,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-56296","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/56296","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=56296"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/56296\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21719"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=56296"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=56296"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=56296"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}