{"id":63659,"date":"2026-04-20T14:16:34","date_gmt":"2026-04-20T12:16:34","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=63659"},"modified":"2026-04-20T14:16:35","modified_gmt":"2026-04-20T12:16:35","slug":"podivejte-se-jak-zarily-na-podporu-pacientu-s-hemofilii","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=63659","title":{"rendered":"Pod\u00edvejte se, jak z\u00e1\u0159ily na podporu pacient\u016f s hemofili\u00ed\u00a0"},"content":{"rendered":"\n

 \u010cerven\u011b nasv\u00edcen\u00e9 budovy<\/strong> v p\u00e1tek 17. dubna z\u00e1\u0159ily po cel\u00e9 \u010cR na podporu pacient\u016f s hemofili\u00ed<\/strong>. <\/p>\n\n\n\n

S vrozenou poruchou sr\u00e1\u017elivosti krve, hemofili\u00ed, \u017eije v \u010cesku p\u0159ibli\u017en\u011b tis\u00edc lid\u00ed. D\u00edky modern\u00ed terapii se jejich \u017eivot v posledn\u00edch desetilet\u00edch z\u00e1sadn\u011b zm\u011bnil. Zat\u00edmco d\u0159\u00edve se pot\u00fdkali s opakovan\u00fdm krv\u00e1cen\u00edm do sval\u016f nebo kloub\u016f a \u010dasto kon\u010dili na invalidn\u00edm voz\u00edku, dnes podstupuj\u00ed preventivn\u00ed l\u00e9\u010dbu a \u017eij\u00ed t\u00e9m\u011b\u0159 bez omezen\u00ed. Nemoc ale nezmizela a n\u011bkte\u0159\u00ed pacienti i jejich rodiny se s n\u00ed nevyrovn\u00e1vaj\u00ed snadno. Pacient\u016fm st\u00e1le hroz\u00ed, \u017ee mohou krv\u00e1cet, nap\u0159\u00edklad p\u0159i \u00farazech a nehod\u00e1ch nebo p\u0159i p\u0159eru\u0161en\u00ed terapie. <\/em><\/p>\n\n\n\n

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Pet\u0159\u00ednsk\u00e1 rozhledna<\/figcaption><\/figure>\n\n\n\n
\"\"<\/figure>\n\n\n\n

Radnice Liberec<\/p>\n\n\n\n

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Z\u00e1mek Brand\u00fds nad Labem<\/figcaption><\/figure>\n\n\n\n
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Kras\u00edkov<\/figcaption><\/figure>\n\n\n\n

I p\u0159es modern\u00ed l\u00e9ky mohou lid\u00e9 s hemofili\u00ed krv\u00e1cet<\/strong><\/p>\n\n\n\n

Nemoc je nav\u017edy a vy\u017eaduje ka\u017edodenn\u00ed p\u00e9\u010di<\/em><\/p>\n\n\n\n

S vrozenou poruchou sr\u00e1\u017elivosti krve, hemofili\u00ed, \u017eije v \u010cesku p\u0159ibli\u017en\u011b tis\u00edc lid\u00ed. D\u00edky modern\u00ed terapii se jejich \u017eivot v posledn\u00edch desetilet\u00edch z\u00e1sadn\u011b zm\u011bnil. Zat\u00edmco d\u0159\u00edve se pot\u00fdkali s opakovan\u00fdm krv\u00e1cen\u00edm do sval\u016f nebo kloub\u016f a \u010dasto kon\u010dili na invalidn\u00edm voz\u00edku, dnes podstupuj\u00ed preventivn\u00ed l\u00e9\u010dbu a \u017eij\u00ed t\u00e9m\u011b\u0159 bez omezen\u00ed. Nemoc ale nezmizela a n\u011bkte\u0159\u00ed pacienti i jejich rodiny se s n\u00ed nevyrovn\u00e1vaj\u00ed snadno. Pacient\u016fm st\u00e1le hroz\u00ed, \u017ee mohou krv\u00e1cet, nap\u0159\u00edklad p\u0159i \u00farazech a nehod\u00e1ch nebo p\u0159i p\u0159eru\u0161en\u00ed terapie. Odborn\u00edci na to upozor\u0148uj\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

Hemofilie je vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, kter\u00e9 se projevuje poruchou sr\u00e1\u017elivosti krve. D\u016fvodem je nedostatek n\u011bkter\u00fdch sr\u00e1\u017eec\u00edch, tzv. koagula\u010dn\u00edch faktor\u016f. \u201eHemofilie postihuje t\u00e9m\u011b\u0159 v\u00fdhradn\u011b mu\u017ee, p\u0159en\u00e1\u0161\u00ed ji ale \u017eeny \u2013 d\u011bdi\u010dnost se toti\u017e v\u00e1\u017ee na \u017eensk\u00fd pohlavn\u00ed chromozom X,\u201c <\/em>popisuje prof. MUDr. Petr Dul\u00ed\u010dek, Ph.D., vedouc\u00ed Centra pro poruchy hemost\u00e1zy IV. intern\u00ed hematologick\u00e9 kliniky Fakultn\u00ed nemocnice Hradec Kr\u00e1lov\u00e9. U pacient\u016f s hemofili\u00ed doch\u00e1z\u00ed k samovoln\u00e9mu krv\u00e1cen\u00ed do sval\u016f nebo kloub\u016f. Pokud se opakuje \u010dasto, hroz\u00ed nemocn\u00fdm ztr\u00e1ta pohyblivosti. \u201eD\u0159\u00edve se s opakovan\u00fdm krv\u00e1cen\u00edm do nosn\u00fdch kloub\u016f pot\u00fdkali zejm\u00e9na pacienti s t\u011b\u017ekou formou hemofilie. To vedlo k v\u00e1\u017en\u00e9mu po\u0161kozen\u00ed kloub\u016f, kter\u00e9 zna\u010dn\u011b limitovalo jejich pohyblivost. \u0158ada pacient\u016f kon\u010dila na invalidn\u00edm voz\u00edku,\u201c<\/em> up\u0159es\u0148uje prof. Dul\u00ed\u010dek.<\/p>\n\n\n\n

\u017divot pacient\u016f s hemofili\u00ed se zm\u011bnil s p\u0159\u00edchodem preventivn\u00ed terapie. Aby se p\u0159ede\u0161lo spont\u00e1nn\u00edmu krv\u00e1cen\u00ed, za\u010dali l\u00e9ka\u0159i pacient\u016fm dopl\u0148ovat chyb\u011bj\u00edc\u00ed sr\u00e1\u017eec\u00ed faktor pomoc\u00ed infuz\u00ed. \u201eV posledn\u00edch deseti letech se p\u00e9\u010de o hemofiliky posunula je\u0161t\u011b d\u00e1l. Dnes jsou k dispozici modern\u00ed p\u0159\u00edpravky s del\u0161\u00ed dobou \u00fa\u010dinku, tak\u017ee je nen\u00ed nutn\u00e9 aplikovat tak \u010dasto, p\u0159\u00edpadn\u011b l\u00e9ky, kter\u00e9 dok\u00e1\u017eou chyb\u011bj\u00edc\u00ed sr\u00e1\u017eec\u00ed faktor p\u0159emostit, a zajistit tak sr\u00e1\u017een\u00ed krve jin\u00fdm zp\u016fsobem,\u201c<\/em> vysv\u011btluje l\u00e9ka\u0159.<\/p>\n\n\n\n

Pacienti si v sou\u010dasn\u00e9 dob\u011b aplikuj\u00ed l\u00e9ky injek\u010dn\u011b sami. Pokud terapii dodr\u017euj\u00ed, mohou \u017e\u00edt aktivn\u011b a nemus\u00ed se tolik pot\u00fdkat s omezen\u00edmi, kter\u00fdm \u010delily star\u0161\u00ed generace. \u201eD\u0159\u00edve mohlo doj\u00edt ke spont\u00e1nn\u00edmu krv\u00e1cen\u00ed kdykoli. To u\u017e dnes neplat\u00ed, nemocn\u00ed maj\u00ed svou nemoc pod kontrolou a \u017eij\u00ed t\u00e9m\u011b\u0159 stejn\u011b kvalitn\u011b jako zdrav\u00ed lid\u00e9. Mohou sportovat, vyh\u00fdbat by se ale m\u011bli hlavn\u011b kontaktn\u00edm sport\u016fm, jako je nap\u0159\u00edklad box, rugby nebo hokej, p\u0159i kter\u00fdch hroz\u00ed velk\u00e9 riziko poran\u011bn\u00ed. Mno\u017estv\u00ed aktivit, kter\u00e9 lidem s hemofili\u00ed nedoporu\u010dujeme, se oproti minulosti v\u00fdrazn\u011b sn\u00ed\u017eilo,\u201c<\/em> \u0159\u00edk\u00e1 MUDr. Ester Z\u00e1potock\u00e1 z Kliniky d\u011btsk\u00e9 hematologie a onkologie 2. LF UK a FN Motol. Z\u00e1rove\u0148 ale dod\u00e1v\u00e1, \u017ee riziko krv\u00e1cen\u00ed st\u00e1le existuje, nap\u0159\u00edklad p\u0159i \u00farazech nebo nehod\u00e1ch a tak\u00e9 p\u0159i p\u0159eru\u0161en\u00ed terapie. \u201eZ\u00e1sadn\u00ed je dodr\u017eovat l\u00e9\u010dbu. Nen\u00ed to v\u017edy \u00fapln\u011b jednoduch\u00e9, aplikace m\u016f\u017ee u n\u011bkter\u00fdch pacient\u016f vyvol\u00e1vat obavu. Tak\u00e9 rodi\u010de d\u011bt\u00ed s hemofili\u00ed v\u00ed, \u017ee kdy\u017e se l\u00e9ky vynechaj\u00ed, mohou nastat v\u00e1\u017en\u00e9 komplikace. Dbaj\u00ed proto na dodr\u017eov\u00e1n\u00ed pravideln\u00e9 terapie. Pro \u0159adu z nich to m\u016f\u017ee b\u00fdt velk\u00e1 psychick\u00e1 z\u00e1t\u011b\u017e, sna\u017e\u00edme se ale d\u011btem a rodin\u00e1m s aplikacemi pom\u00e1hat a hledat zp\u016fsoby, jak proces co nejv\u00edce usnadnit,\u201c<\/em> vysv\u011btluje MUDr. Z\u00e1potock\u00e1.<\/p>\n\n\n\n

V\u011bt\u0161ina rodin se s hemofili\u00ed dok\u00e1\u017ee vyrovnat sama, v p\u0159\u00edpad\u011b obt\u00ed\u017e\u00ed a v\u011bt\u0161\u00edch \u00fazkost\u00ed u\u017e je ale vhodn\u00e9 v\u0161e probrat s psychologem. \u201eT\u0159i \u010dtvrtiny hemofilik\u016f maj\u00ed nemoc v rodin\u011b \u2013 to znamen\u00e1, \u017ee se s touto nemoc\u00ed nesetk\u00e1vaj\u00ed poprv\u00e9. Rodi\u010de v\u011bd\u00ed, \u017ee jedno velk\u00e9 krv\u00e1cen\u00ed m\u016f\u017ee zp\u016fsobit nevratn\u00e9 po\u0161kozen\u00ed kloub\u016f. Maj\u00ed z toho strach. D\u016fle\u017eit\u00e9 p\u0159itom je, aby byli nejbli\u017e\u0161\u00ed nemocn\u00fdch v klidu. V psychick\u00e9 pohod\u011b je pak i pacient,\u201c <\/em>popisuje Mgr. Petra Bu\u010dkov\u00e1, klinick\u00e1 psycholo\u017eka z Fakultn\u00ed nemocnice Brno.<\/p>\n\n\n\n

Vyrovnat se s nemoc\u00ed pom\u00e1h\u00e1 rodin\u00e1m tak\u00e9 pacientsk\u00e1 organizace \u010cesk\u00fd svaz hemofilik\u016f \u2013 prost\u0159ednictv\u00edm osv\u011bty, kterou \u0161\u00ed\u0159\u00ed na sv\u00fdch webov\u00fdch str\u00e1nk\u00e1ch<\/a>, i pravideln\u00fdmi setk\u00e1n\u00edmi nemocn\u00fdch a jejich rodin. \u201ePo\u0159\u00e1d\u00e1me t\u00e1bory pro d\u011bti i mezigenera\u010dn\u00ed setk\u00e1n\u00ed hemofilik\u016f. Ta jsou d\u016fle\u017eit\u00e1 zejm\u00e9na pro dosp\u00edvaj\u00edc\u00ed, kte\u0159\u00ed si l\u00e9\u010dbu za\u010d\u00ednaj\u00ed aplikovat sami. Kdy\u017e se sejdou se star\u0161\u00edm pacientem s hemofili\u00ed, kter\u00fd je na voz\u00edku, proto\u017ee k dispozici preventivn\u00ed terapii nem\u011bl, o to v\u00edc si uv\u011bdom\u00ed, jak d\u016fle\u017eit\u00e9 je l\u00e9\u010dbu nepodce\u0148ovat,\u201c <\/em>popisuje p\u0159edseda \u010cesk\u00e9ho svazu hemofilik\u016f Martin Boh\u016fn, kter\u00fd s hemofili\u00ed \u017eije tak\u00e9. Rodin\u00e1m s mal\u00fdmi d\u011btmi pom\u00e1h\u00e1 i organizace Hemojunior<\/a>, mimo jin\u00e9 rekondi\u010dn\u011b-eduka\u010dn\u00edmi pobyty.<\/p>\n\n\n\n

P\u0159\u00edmona Sv\u011btov\u00fd den hemofilie, 17. dubna, se \u0159ada m\u00edst v \u010cesku rozsv\u00edtila \u010derven\u011b. Symbolicky se rozz\u00e1\u0159ila Praha, Brno, Olomouc, Plze\u0148, \u010cesk\u00e9 Bud\u011bjovice, Hradec Kr\u00e1lov\u00e9, Rakovn\u00edk, N\u00e1chod, Humpolec, Brunt\u00e1l, Nymburk, Liberec, Uni\u010dov, Opava, Jarom\u011b\u0159, Kras\u00edkov a z\u00e1mek v Brand\u00fdse nad Labem.<\/p>\n","protected":false},"excerpt":{"rendered":"

 \u010cerven\u011b nasv\u00edcen\u00e9 budovy v p\u00e1tek 17. dubna z\u00e1\u0159ily po cel\u00e9 \u010cR na podporu pacient\u016f s hemofili\u00ed.  S vrozenou poruchou sr\u00e1\u017elivosti krve, hemofili\u00ed, \u017eije v \u010cesku p\u0159ibli\u017en\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":63664,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-63659","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\/63659","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=63659"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63659\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/63664"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=63659"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63659"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63659"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}