{"id":15631,"date":"2014-04-17T06:54:55","date_gmt":"2014-04-17T04:54:55","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=15631"},"modified":"2014-04-17T09:07:42","modified_gmt":"2014-04-17T07:07:42","slug":"hemofilikum-pomaha-novy-typ-lecby","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=15631","title":{"rendered":"Hemofilik\u016fm pom\u00e1h\u00e1 nov\u00fd typ l\u00e9\u010dby"},"content":{"rendered":"

Ani modern\u00ed medic\u00edna neum\u00ed vyl\u00e9\u010dit genetickou poruchu sr\u00e1\u017elivosti krve. M\u016f\u017ee ale krv\u00e1cen\u00ed rychle zastavit, a dokonce mu p\u0159edch\u00e1zet. L\u00e9ka\u0159i nyn\u00ed u dosp\u011bl\u00fdch s t\u011b\u017e\u0161\u00ed formou nemoci prosazuj\u00ed nov\u00fd zp\u016fsob l\u00e9\u010dby, kter\u00fd se osv\u011bd\u010dil u d\u011btsk\u00fdch pacient\u016f.\u00a0<\/strong><\/p>\n

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P\u0159ed n\u011bkolika desetilet\u00edmi kon\u010dili pacienti s t\u011b\u017ekou hemofili\u00ed \u010dasto v ran\u00e9m v\u011bku na invalidn\u00edm voz\u00edku. Dnes nen\u00ed na \u0159ad\u011b z nich z\u00e1va\u017en\u00e1 porucha krevn\u00ed sr\u00e1\u017elivosti na prvn\u00ed pohled v\u016fbec poznat. Hlavn\u011b mlad\u0161\u00ed hemofilici maj\u00ed \u0161anci \u017e\u00edt prakticky bez jak\u00fdchkoliv omezen\u00ed.<\/p>\n

Zden\u011bk B\u0159ezina takov\u00e9 \u0161t\u011bst\u00ed nem\u00e1, ale je r\u00e1d, \u017ee se dne\u0161n\u00ed doby mohl do\u017e\u00edt. S nemoc\u00ed za\u010dal z\u00e1pasit p\u0159ed t\u00e9m\u011b\u0159 \u0161edes\u00e1ti lety, kdy mu po zd\u00e1nliv\u011b ban\u00e1ln\u00edm \u00farazu ve \u0161kolce ne\u010dekan\u011b oteklo koleno. Na mal\u00e9m jihomoravsk\u00e9m m\u011bst\u011b, kde tehdy s rodinou a p\u011bti sourozenci \u017eil, se takov\u00e9 „nehody“ v t\u00e9 dob\u011b \u0159e\u0161ily studen\u00fdm obkladem a klidem.<\/p>\n

Jako kluk m\u011bl pozd\u011bji podobn\u00fdch \u00faraz\u016f nepo\u010d\u00edtan\u011b. Na rozd\u00edl od sv\u00fdch kamar\u00e1d\u016f mu ale i drobn\u00e9 poran\u011bn\u00ed p\u016fsobilo velk\u00e9 probl\u00e9my. Postupn\u011b se p\u0159i d\u011btsk\u00fdch hr\u00e1ch musel proto sm\u00ed\u0159it nejen s mnoh\u00fdmi z\u00e1kazy, ale i s \u010dast\u00fdmi pobyty v nemocnici.<\/p>\n

Otekl\u00e9 klouby mu tam l\u00e9\u010dili s\u00e1drov\u00e1n\u00edm, ztracenou krev nahrazovali transfuzemi. Do \u0161koly chodil u\u017e v brn\u011bnsk\u00e9m \u00dastavu soci\u00e1ln\u00ed p\u00e9\u010de pro t\u011blesn\u011b posti\u017een\u00e9 a dodnes m\u00e1 pohybov\u00e9 probl\u00e9my. Modern\u00ed l\u00e9ky mu ale pom\u00e1haj\u00ed alespo\u0148 v tom, aby se jeho st\u00e1vaj\u00edc\u00ed pot\u00ed\u017ee d\u00e1le nezhor\u0161ovaly.<\/p>\n

P\u0159esto\u017ee u\u017e dnes ve\u0159ejnost o t\u00e9to nemoci v\u00ed mnohem v\u00edc ne\u017e d\u0159\u00edv, st\u00e1le kolem n\u00ed panuje spousta pov\u011br. „N\u011bkte\u0159\u00ed lid\u00e9 si nap\u0159\u00edklad mysl\u00ed, \u017ee z poran\u011bn\u00e9ho hemofilika st\u0159\u00edk\u00e1 krev proudem,“ \u0159\u00edk\u00e1 Jan Blatn\u00fd, prim\u00e1\u0159 Odd\u011blen\u00ed d\u011btsk\u00e9 hematologie Fakultn\u00ed nemocnice Brno. „Ve skute\u010dnosti v\u0161ak nekrv\u00e1c\u00ed ani tak v\u00edce, jako sp\u00ed\u0161 d\u00e9le ne\u017e b\u011b\u017en\u00fd \u010dlov\u011bk, a p\u0159edev\u0161\u00edm pak do m\u00edst, kde to neb\u00fdv\u00e1 obvykl\u00e9.“<\/p>\n

Jestli\u017ee nap\u0159\u00edklad zdrav\u00fd \u010dlov\u011bk p\u0159i rann\u00edm b\u011bhu za tramvaj\u00ed \u0161patn\u011b do\u0161l\u00e1pne, bude m\u00edt mo\u017en\u00e1 p\u016fl dne otekl\u00fd kotn\u00edk. Kdy\u017e se ale podobn\u00e1 nehoda stane hemofilikovi, krev m\u016f\u017ee za\u010d\u00edt nat\u00e9kat do kloub\u016f nebo do sval\u016f a tam \u0161kodit. Po\u0161kozen\u00e9 m\u00edsto je pak n\u00e1chyln\u011bj\u0161\u00ed k dal\u0161\u00edmu krv\u00e1cen\u00ed.<\/p>\n

V praxi se objevil nov\u00fd l\u00e9\u010debn\u00fd postup, kter\u00fd posunul l\u00e9\u010dbu t\u00e9to nemoci o velk\u00fd krok dop\u0159edu. Z\u00e1sadn\u00ed objev u\u010dinila v 70. letech minul\u00e9ho stolet\u00ed \u0161v\u00e9dsk\u00e1 doktorka Inga Marie Nilsson. Prok\u00e1zala, \u017ee pokud se d\u00edky preventivn\u00edmu pod\u00e1v\u00e1n\u00ed chyb\u011bj\u00edc\u00edch sr\u00e1\u017eec\u00edch faktor\u016f poda\u0159\u00ed jejich hladinu udr\u017eet na ur\u010dit\u00e9 v\u00fd\u0161i, v\u00fdrazn\u011b se sn\u00ed\u017e\u00ed po\u010det krv\u00e1cen\u00ed, a tud\u00ed\u017e se i m\u00e9n\u011b po\u0161kozuj\u00ed klouby.<\/p>\n

Pr\u00e1v\u011b tato my\u0161lenka se stala z\u00e1kladem takzvan\u00e9 profylaktick\u00e9 l\u00e9\u010dby<\/strong>. Obzvl\u00e1\u0161\u0165 dobr\u00e9 v\u00fdsledky byly p\u0159itom patrn\u00e9 zejm\u00e9na u d\u011btsk\u00fdch pacient\u016f, kte\u0159\u00ed se pomoc\u00ed t\u00e9to metody za\u010dali l\u00e9\u010dit velice z\u00e1hy. Podle slov doktora Blatn\u00e9ho proto b\u00fdv\u00e1 optim\u00e1ln\u00ed profylaktickou l\u00e9\u010dbu zah\u00e1jit je\u0161t\u011b d\u0159\u00edv, ne\u017e dojde k prvn\u00edmu krv\u00e1cen\u00ed.<\/p>\n

„Ide\u00e1ln\u00ed proto je, kdy\u017e se k n\u00e1m \u017eena z hemofilick\u00e9 rodiny vyprav\u00ed je\u0161t\u011b p\u0159ed ot\u011bhotn\u011bn\u00edm,“ m\u00edn\u00ed doktor Peter Salaj z \u00dastavu hematologie a krevn\u00ed transfuze v Praze. „V na\u0161em \u00fastavu u\u017e n\u011bkolik desetilet\u00ed vedeme datab\u00e1zi \u010desk\u00fdch hemofilik\u016f, dok\u00e1\u017eeme tedy na z\u00e1klad\u011b krevn\u00edch test\u016f ur\u010dit i genetickou p\u0159\u00ed\u010dinu, kter\u00e1 se v ur\u010dit\u00e9 rodin\u011b po generace d\u011bd\u00ed,“ vysv\u011btluje. To umo\u017e\u0148uje l\u00e9pe ur\u010dit konkr\u00e9tn\u00ed rizika.<\/p>\n

„D\u00edky dostupnosti sr\u00e1\u017eec\u00edch faktor\u016f a profylaktick\u00e9 l\u00e9\u010db\u011b, kter\u00e1 se u n\u00e1s v posledn\u00ed dob\u011b st\u00e1le v\u00edce prosazuje, nem\u00edvaj\u00ed u\u017e maminky takov\u00fd strach z hemofilie jako d\u0159\u00edv,“ \u0159\u00edk\u00e1 doktor Salaj. Po\u010det matek, kter\u00e9 se rozhodnou ukon\u010dit t\u011bhotenstv\u00ed, kdy\u017e zjist\u00ed, \u017ee o\u010dek\u00e1van\u00e9 d\u00edt\u011b bude hemofilik, proto podle jeho slov v posledn\u00ed dob\u011b v\u00fdrazn\u011b poklesl.<\/p>\n

Nejnov\u011bj\u0161\u00ed v\u00fdzkumy nyn\u00ed potvrzuj\u00ed, \u017ee profylaktick\u00e1 l\u00e9\u010dba<\/strong> m\u016f\u017ee prosp\u011bt i dosp\u011bl\u00fdm<\/strong>, zejm\u00e9na pak t\u011bm, kte\u0159\u00ed trp\u00ed t\u011b\u017e\u0161\u00ed formou t\u00e9to nemoci.<\/p>\n

„Evropsk\u00e9 studie n\u00e1m potvrdily, \u017ee \u010d\u00e1st hemofilik\u016f v dosp\u00edv\u00e1n\u00ed profylaktickou l\u00e9\u010dbu p\u0159eru\u0161\u00ed,“ \u0159\u00edk\u00e1 doktor Jan Blatn\u00fd. „Brzy v\u0161ak za\u010dnou op\u011bt \u010dast\u011bji krv\u00e1cet, a proto se k t\u00e9to l\u00e9\u010db\u011b velmi rychle vracej\u00ed.“<\/p>\n

Celo\u017eivotn\u00ed profylaktick\u00e1 l\u00e9\u010dba m\u00e1 sv\u00e9 opodstatn\u011bn\u00ed. Ale za\u010d\u00ednat s n\u00ed u \u010dty\u0159ic\u00e1tn\u00edk\u016f nebo pades\u00e1tn\u00edk\u016f? Doned\u00e1vna pova\u017eovali mnoz\u00ed n\u011bco takov\u00e9ho za zbyte\u010dn\u00fd luxus.<\/p>\n

Argumentovali t\u00edm, \u017ee tito pacienti maj\u00ed u\u017e obvykle klouby z\u00e1va\u017en\u011b posti\u017een\u00e9, a nem\u00e1 proto smysl jim p\u0159edepisovat pom\u011brn\u011b n\u00e1kladnou l\u00e9\u010dbu. „Klouby u\u017e sice t\u011bmto pacient\u016fm opravdu nesprav\u00edme, ale prokazateln\u011b jim m\u016f\u017eeme zv\u00fd\u0161it kvalitu \u017eivota,“ \u0159\u00edk\u00e1 s p\u0159esv\u011bd\u010den\u00edm doktor Blatn\u00fd. Jinak \u0159e\u010deno tak\u00e9 u t\u011bchto lid\u00ed je mo\u017en\u00e9 pomoc\u00ed t\u00e9to metody sn\u00ed\u017eit po\u010det krv\u00e1cen\u00ed a zabr\u00e1nit tak dal\u0161\u00edmu zhor\u0161ov\u00e1n\u00ed situace.<\/p>\n

Za velmi d\u016fle\u017eit\u00fd pak pova\u017euje projekt v\u010dasn\u00e9 rehabilitace, kter\u00e9mu se spolu s kolegy intenzivn\u011b v\u011bnuje.<\/p>\n

„Jde n\u00e1m o to, aby se pacienti b\u011bhem l\u00e1ze\u0148sk\u00fdch pobyt\u016f nau\u010dili nejen to, jak si spr\u00e1vn\u011b p\u00edchat injekce, ale i jak dennodenn\u011b cvi\u010dit nebo zvl\u00e1dat akutn\u00ed stavy,“ dod\u00e1 na vysv\u011btlenou. Jinak \u0159e\u010deno aby se nau\u010dili se svou nemoc\u00ed co nejl\u00e9pe \u017e\u00edt a vyrovn\u00e1vat se s n\u00ed.<\/p>\n

Bli\u017e\u0161\u00ed informace o nemoci a jej\u00ed l\u00e9\u010db\u011b najdete v dne\u0161n\u00edm vyd\u00e1n\u00ed Lidov\u00fdch novin<\/em><\/p>\n

O autorovi: IVANA MATY\u00c1\u0160OV\u00c1<\/p>\n

ilustra\u010dn\u00ed foto: sxc.hu<\/p>\n","protected":false},"excerpt":{"rendered":"

Ani modern\u00ed medic\u00edna neum\u00ed vyl\u00e9\u010dit genetickou poruchu sr\u00e1\u017elivosti krve. M\u016f\u017ee ale krv\u00e1cen\u00ed rychle zastavit, a dokonce mu p\u0159edch\u00e1zet. L\u00e9ka\u0159i nyn\u00ed u dosp\u011bl\u00fdch s t\u011b\u017e\u0161\u00ed formou […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14127,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-15631","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\/15631","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=15631"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/15631\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14127"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=15631"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=15631"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=15631"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}