{"id":11061,"date":"2020-12-04T15:00:00","date_gmt":"2020-12-04T13:00:00","guid":{"rendered":"https:\/\/havas.cz\/?post_type=pressroom&#038;p=11061"},"modified":"2020-12-07T15:01:17","modified_gmt":"2020-12-07T13:01:17","slug":"vyjimecne-rychly-vyvoj-v-lecbe-hereditarniho-angioedemu","status":"publish","type":"pressroom","link":"https:\/\/havas.cz\/en\/pressroom\/vyjimecne-rychly-vyvoj-v-lecbe-hereditarniho-angioedemu\/","title":{"rendered":"V\u00fdjime\u010dn\u011b rychl\u00fd v\u00fdvoj v l\u00e9\u010db\u011b heredit\u00e1rn\u00edho angioed\u00e9mu"},"content":{"rendered":"<p>V\u00a0\u010cesk\u00e9 republice byl prvn\u00ed pacient s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem diagnostikov\u00e1n v\u00a0roce 1975 a\u00a0onemocn\u011bn\u00ed je tedy na na\u0161em \u00fazem\u00ed zn\u00e1m\u00e9 pom\u011brn\u011b kr\u00e1tce. S&nbsp;t\u00edm souvis\u00ed i&nbsp;fakt, \u017ee l\u00e9ky d\u0159\u00edve b\u011b\u017en\u011b u\u017e\u00edvan\u00e9 k\u00a0l\u00e9\u010db\u011b angioed\u00e9mu m\u011bly \u0159adu kontraindikac\u00ed a&nbsp;omezen\u00e9 u\u017eit\u00ed, tak\u017ee doch\u00e1zelo n\u011bkdy i\u00a0k\u00a0\u00famrt\u00edm v\u00a0d\u016fsledku z\u00e1va\u017en\u00fdch otok\u016f v\u00a0oblasti hrdla (udu\u0161en\u00edm) nebo byli pacienti zbyte\u010dn\u011b operov\u00e1ni kv\u016fli z\u00e1m\u011bn\u011b otok\u016f za n\u00e1hlou p\u0159\u00edhodu b\u0159i\u0161n\u00ed.<sup>4<\/sup> Pln\u011b \u00fa\u010dinn\u00fd byl pouze jedin\u00fd prepar\u00e1t, jen\u017e se vyr\u00e1b\u011bl ze s\u00e9ra zdrav\u00fdch d\u00e1rc\u016f a&nbsp;dopl\u0148oval vrozen\u011b chyb\u011bj\u00edc\u00ed l\u00e1tku v\u00a0organismu pacienta.<sup>5,6 <\/sup>P\u0159elomov\u00e9 obdob\u00ed nastalo v\u00a0roce 2011. Tehdy se do \u010cesk\u00e9 republiky dostala nov\u00e1 akutn\u00ed z\u00e1chrann\u00e1 l\u00e9\u010dba a&nbsp;s\u202fn\u00ed u\u00a0n\u00e1s vznikla\u00a0\u010dty\u0159i specializovan\u00e1 centra\u00a0pro l\u00e9\u010dbu HAE v\u202fPraze, Brn\u011b, Plzni a&nbsp;Hradci Kr\u00e1lov\u00e9. L\u00e9\u010dba se mohla aplikovat pouze v\u00a0t\u011bchto centrech a&nbsp;zabr\u00e1nila pln\u00e9mu rozvoji otok\u016f.<sup>2<\/sup><\/p>\n<p><em>\u201eBylo to pro n\u00e1s l\u00e9ka\u0159e, ale i&nbsp;pacienty zlomov\u00e9. M\u011bli jsme k\u00a0dispozici adekv\u00e1tn\u00ed l\u00e9\u010dbu a&nbsp;d\u00edky vzniku center se mohl v\u00fdrazn\u011b zv\u00fd\u0161it standard p\u00e9\u010de o&nbsp;nemocn\u00e9. Do t\u00e9 doby v\u011bt\u0161ina pacient\u016f s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem byla l\u00e9\u010dena na r\u016fzn\u00fdch odd\u011blen\u00edch dle org\u00e1nov\u00fdch projev\u016f a&nbsp;byla vedena nap\u0159\u00edklad na ORL, revmatologii, intern\u00edch odd\u011blen\u00edch \u010di v\u00a0alergologick\u00fdch ambulanc\u00edch. Pov\u011bdom\u00ed o&nbsp;t\u00e9to vz\u00e1cn\u00e9 diagn\u00f3ze bylo mal\u00e9 a&nbsp;otoky zp\u016fsoben\u00e9 heredit\u00e1rn\u00edm angioed\u00e9mem se mnohdy tlumily l\u00e9ky na alergick\u00e9 otoky, za n\u011b\u017e byly zam\u011b\u0148ov\u00e1ny. Nov\u011b vznikl\u00e1 centra ov\u0161em za\u010dala soust\u0159edit pacienty na jednom odd\u011blen\u00ed se \u0161kolen\u00fdm person\u00e1lem a&nbsp;rovn\u011b\u017e vznikl registr pacient\u016f s\u00a0HAE. Specializovan\u00e1 centra p\u0159itom nejsou ani dnes v\u00a0mnoha zem\u00edch zcela b\u011b\u017en\u00e1,\u201c<\/em> p\u0159ibli\u017euje MUDr. Irena Kr\u010dmov\u00e1, CSc., z&nbsp;\u00dastavu imunologie a&nbsp;alergologie FN Hradec Kr\u00e1lov\u00e9.<\/p>\n<p><strong>Preventivn\u00ed mo\u017enosti, kter\u00e9 mohou b\u00fdt \u0159e\u0161en\u00edm i&nbsp;pro \u010desk\u00e9 pacienty<\/strong><\/p>\n<p>Posledn\u00edch deset let maj\u00ed pacienti s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem v&nbsp;\u010cR k\u00a0dispozici akutn\u00ed z\u00e1chrannou l\u00e9\u010dbu, kter\u00e1 v\u00fdrazn\u011b zamezuje rozvoji otok\u016f.<sup>2<\/sup> <em>\u201eSpr\u00e1vn\u011b zal\u00e9\u010den\u00fd otok toti\u017e d\u00edky l\u00e9\u010db\u011b odezn\u00ed zhruba do 2\u00a0hodin, nel\u00e9\u010den\u00fd otok v\u0161ak omezuje nemocn\u00e9ho 2\u20133 dny, n\u011bkdy i&nbsp;z\u0159eteln\u011b d\u00e9le. Akutn\u00ed z\u00e1chrann\u00e1 l\u00e9\u010dba se pod\u00e1v\u00e1 injek\u010dn\u011b do podko\u017e\u00ed. Je nesm\u00edrnou v\u00fdhodou, \u017ee si ji pacient po zacvi\u010den\u00ed m\u016f\u017ee aplikovat s\u00e1m, co\u017e mu umo\u017en\u00ed jezdit na dovolen\u00e9 nebo sportovat a&nbsp;nemus\u00ed hned hledat prvn\u00ed l\u00e9ka\u0159skou pohotovost. Jen je ur\u010dit\u00fdm omezen\u00edm, \u017ee injekce pro akutn\u00ed stavy je hrazena pouze pro \u017eivot ohro\u017euj\u00edc\u00ed otoky, a&nbsp;to v\u00a0oblasti hrdla, obli\u010deje a&nbsp;v\u00a0oblasti za\u017e\u00edvac\u00edho traktu. Na jin\u00e9, stejn\u011b omezuj\u00edc\u00ed otoky (nap\u0159\u00edklad t\u011b\u017ek\u00e9 kon\u010detinov\u00e9), kter\u00e9 by si zaslou\u017eily takt\u00e9\u017e pozornost, se \u00fahrada nevztahuje,\u201c <\/em>vysv\u011btluje MUDr. Irena Kr\u010dmov\u00e1.<\/p>\n<p><em>\u00a0<\/em>Za posledn\u00ed roky v\u0161ak v\u00a0oblasti t\u00e9to vz\u00e1cn\u00e9 diagn\u00f3zy p\u0159ibyly dal\u0161\u00ed \u00fa\u010dinn\u00e9 l\u00e9ky, kter\u00e9 vracej\u00ed nemocn\u00e9 do norm\u00e1ln\u00edho \u017eivota. <em>\u201e<\/em><em>Razantn\u011b se zrychlil v\u00fdzkum a&nbsp;aktu\u00e1ln\u011b m\u00e1me k\u00a0dispozici nov\u00e9 typy preventivn\u00ed l\u00e9\u010dby, kter\u00e9 jsou nemocn\u00e9mu aplikov\u00e1ny pravideln\u011b tak, aby k\u00a0ohro\u017euj\u00edc\u00edmu a&nbsp;nenad\u00e1l\u00e9mu vzniku otok\u016f v\u016fbec nedoch\u00e1zelo. Ve v\u00fdzkumu jsou i&nbsp;dal\u0161\u00ed formy terapie a&nbsp;jejich p\u0159\u00edslibem je v\u00fdrazn\u00e9 sn\u00ed\u017een\u00ed po\u010dtu jak\u00fdchkoliv otok\u016f, v\u00a0n\u011bkter\u00fdch p\u0159\u00edpadech pak i&nbsp;jejich \u00fapln\u00e1 absence. To pacient\u016fm poskytne mo\u017enost \u017e\u00edt \u017eivotem zdrav\u00e9ho \u010dlov\u011bka bez omezen\u00ed, nebo\u0165 dosud byl heredit\u00e1rn\u00ed angioed\u00e9m a\u017e invalidizuj\u00edc\u00ed,\u201c<\/em> zd\u016fraz\u0148uje MUDr. Kr\u010dmov\u00e1.<\/p>\n<p><strong>Genetika p\u0159isp\u011bla k\u00a0lep\u0161\u00ed diagnostice <\/strong><\/p>\n<p>Velk\u00fd posun, co se t\u00fdk\u00e1 heredit\u00e1rn\u00edho angioed\u00e9mu, se ud\u00e1l i&nbsp;na poli diagnostiky s\u00a0vyu\u017eit\u00edm genetiky. Snahou je toti\u017e zajistit p\u00e9\u010di o&nbsp;cel\u00e9 rodiny s\u00a0touto z\u00e1va\u017enou a&nbsp;nelehkou nemoc\u00ed. Jeliko\u017e jde o&nbsp;geneticky d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, doporu\u010duj\u00ed se mapovat cel\u00e9 rodiny, \u010d\u00edm\u017e se zvy\u0161uje v\u010dasn\u00e1 i&nbsp;spr\u00e1vn\u00e1 diagnostika nemoci a&nbsp;tak\u00e9 p\u0159esn\u00e9 ur\u010den\u00ed typu heredit\u00e1rn\u00edho angioed\u00e9mu.<sup>2<\/sup> <em>\u201ePacienti s\u00a0potvrzenou genetickou z\u00e1t\u011b\u017e\u00ed, i&nbsp;pokud jsou dosud bez p\u0159\u00edznak\u016f, jsou vedeni v\u00a0centrech pro l\u00e9\u010dbu HAE. V\u010dasn\u00e1 genetick\u00e1 diagnostika zamez\u00ed nespr\u00e1vn\u00e9 l\u00e9\u010db\u011b otok\u016f a&nbsp;m\u016f\u017ee zachr\u00e1nit \u017eivot p\u0159i n\u00e1hl\u00e9m vzniku z\u00e1va\u017en\u00e9ho otoku u&nbsp;jedince, kter\u00fd heredit\u00e1rn\u00ed angioed\u00e9m doposud nezaznamenal<\/em>,<em>\u201c<\/em> vyzdvihuje MUDr. Kr\u010dmov\u00e1.<\/p>\n<p><strong>D\u016fle\u017eit\u00e1 role pacientsk\u00fdch organizac\u00ed a&nbsp;cesta k\u00a0legislativn\u00edm zm\u011bn\u00e1m<\/strong><\/p>\n<p>Celosv\u011btov\u011b i&nbsp;lok\u00e1ln\u011b dnes vznikaj\u00ed pacientsk\u00e9 organizace, kter\u00e9 se sdru\u017euj\u00ed pod glob\u00e1ln\u00ed pacientskou organizaci HAE International. Spole\u010dn\u011b se zasazuj\u00ed o&nbsp;lep\u0161\u00ed dostupnost p\u00e9\u010de a&nbsp;o&nbsp;jej\u00ed hrazen\u00ed pro pacienty a&nbsp;celkov\u011b rovn\u011b\u017e podporuj\u00ed lep\u0161\u00ed kvalitu \u017eivota a&nbsp;zvl\u00e1d\u00e1n\u00ed tohoto nelehk\u00e9ho celo\u017eivotn\u00edho onemocn\u011bn\u00ed.<sup>7<\/sup> V\u00a0\u010cesku vznikla z\u00a0iniciativy rodi\u010d\u016f d\u011bt\u00ed s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem v\u00a0roce 2019 neziskov\u00e1 organizace HAE Junior, je\u017e si klade za c\u00edl p\u0159edev\u0161\u00edm zkvalitn\u011bn\u00ed \u017eivota d\u011bt\u00ed a&nbsp;mlad\u00fdch lid\u00ed, kte\u0159\u00ed maj\u00ed v\u0161e p\u0159ed sebou.<sup>9<\/sup> Z\u00e1rove\u0148 se u&nbsp;n\u00e1s m\u011bn\u00ed prost\u0159ed\u00ed pro \u00fahradu l\u00e9k\u016f pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed, co\u017e je velmi d\u016fle\u017eit\u00e9 vzhledem k\u00a0dostupnosti modern\u00edch preventivn\u00edch l\u00e9\u010deb pro pacienty s&nbsp;HAE. Jedn\u00e1 se o&nbsp;l\u00e9ky, kter\u00e9 jen t\u011b\u017ece vstupovaly do klasick\u00fdch \u00fahradov\u00fdch syst\u00e9m\u016f a&nbsp;pro \u0159adu lid\u00ed tak nebyly dostupn\u00e9. To v\u0161e by se do budoucna m\u011blo zm\u011bnit vlivem p\u0159ipravovan\u00fdch legislativn\u00edch zm\u011bn. Vyhl\u00eddky pacient\u016f s\u00a0HAE se tak v\u00a0posledn\u00edch letech st\u00e1le zlep\u0161uj\u00ed, a&nbsp;to pozitivn\u011b ovliv\u0148uje i&nbsp;samotnou kvalitu jejich \u017eivota.<\/p>\n<p><strong>Kontakt pro m\u00e9dia: <\/strong><\/p>\n<p>Mark\u00e9ta Stillerov\u00e1 (Hrab\u00e1nkov\u00e1), Senior PR Director, Havas, 702\u00a0213\u00a0341, <a href=\"mailto:marketa.stillerova@havaspr.com\">marketa.stillerova@havaspr.com<\/a><\/p>\n<p>Michaela Jura\u010d\u00e1kov\u00e1, PR Executive, Havas, 602&nbsp;766\u00a0398, <a href=\"mailto:michaela.juracakova@havaspr.com\">michaela.juracakova@havaspr.com<\/a><\/p>\n<p>Zdroje:<\/p>\n<ol>\n<li>\u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. <em>Co je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed<\/em> [online]. Dostupn\u00e9 z: <a href=\"http:\/\/vzacna-onemocneni.cz\/vzacna-onemocneni\/co-je-vzacne-onemocneni.html\">http:\/\/vzacna-onemocneni.cz\/vzacna-onemocneni\/co-je-vzacne-onemocneni.html<\/a><\/li>\n<li>KR\u010cMOV\u00c1, Irena. Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 trendy v&nbsp;l\u00e9\u010db\u011b. <em>Intern\u00ed Medic\u00edna<\/em> [online]. 2017; 9(3): 131\u2013137 [cit. 11. 11. 2019]. Dostupn\u00e9 z: <a href=\"https:\/\/www.internimedicina.cz\/pdfs\/int\/2017\/03\/06.pdf\">https:\/\/www.internimedicina.cz\/pdfs\/int\/2017\/03\/06.pdf<\/a>.<\/li>\n<li>HAE-IMUNO. Ob\u010dansk\u00e9 sdru\u017een\u00ed na ochranu pacient\u016f s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem. <em>Stav boje proti HAE v\u00a0Evrop\u011b<\/em> [online]. Dostupn\u00e9 z: <a href=\"http:\/\/hae-imuno.cz\/files\/HAEi-Report-czech.pdf\">http:\/\/hae-imuno.cz\/files\/HAEi-Report-czech.pdf<\/a><\/li>\n<li>MOTOL IN. <em>Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 \u017eivot s\u00a0otoky<\/em>. Duben 2020.<\/li>\n<li>PREMATTA, M., GIBBS, J.G., PRATT, E.L., STOUGHTON, T.R., CRAIG, T.J. Fresh frozen plasma for the treatment of hereditary angioedema.\u00a0<em>Ann Allergy Asthma Immunol<\/em>.\u00a02007; 98(4): 383\u2013388.<\/li>\n<li>WINNEWISSER, J., ROSSI, M., PATH, P. Type I&nbsp;hereditary angioedema: variability of clinical presentation and course within two large kindreds.\u00a0<em>J\u00a0Intern Med<\/em>.\u00a01997; 241: 39\u201346.<\/li>\n<li>HAE International. <em>About HAEi<\/em> [online]. Dostupn\u00e9 z: <a href=\"https:\/\/haei.org\/about-haei\/\">https:\/\/haei.org\/about-haei\/<\/a><\/li>\n<li>HAE Junior. <em>O n\u00e1s <\/em>[online]<em>.<\/em> Dostupn\u00e9 z: <a href=\"https:\/\/haejunior.cz\/\">https:\/\/haejunior.cz\/<\/a>o-nas\/<\/li>\n<\/ol>\n<p>&nbsp;<\/p>\n<p>C-ANPROM\/CZ\/HAE\/0007 Prosinec 2020<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Heredit\u00e1rn\u00ed angioed\u00e9m (HAE) je jedn\u00edm z 8 000 vz\u00e1cn\u00fdch genetick\u00fdch onemocn\u011bn\u00ed.<sup>1<\/sup> Projevuje se bolestiv\u00fdmi, nesv\u011bdiv\u00fdmi a opakuj\u00edc\u00edmi se otoky podko\u017e\u00ed a sliznic na r\u016fzn\u00fdch \u010d\u00e1stech t\u011bla<sup>2<\/sup> a pro pacienta p\u0159edstavuje velkou a\u017e \u017eivot ohro\u017euj\u00edc\u00ed z\u00e1t\u011b\u017e. V\u00fdrazn\u00e9 otoky zp\u016fsoben\u00e9 HAE dok\u00e1\u017e\u00ed \u010dlov\u011bka zm\u011bnit k nepozn\u00e1n\u00ed, znemo\u017en\u00ed ch\u016fzi a \u010dasto i schopnost vykon\u00e1vat zam\u011bstn\u00e1n\u00ed.<sup>3<\/sup> Choroba je nav\u00edc d\u011bdi\u010dn\u00e1 a potomek nemocn\u00e9ho jedince je tak z 50 % ohro\u017een.<sup>2<\/sup> Medic\u00edna je dnes v\u0161ak ji\u017e na takov\u00e9 \u00farovni, kdy nev\u011bnuje pozornost pouze t\u011bm nejroz\u0161\u00ed\u0159en\u011bj\u0161\u00edm diagn\u00f3z\u00e1m, ale zna\u010dn\u00fd pokrok se dost\u00e1v\u00e1 i m\u00e9n\u011b zn\u00e1m\u00fdm nemocem. A\u010d o heredit\u00e1rn\u00edm angioed\u00e9mu sly\u0161el za posledn\u00edch deset let pravd\u011bpodobn\u011b jen m\u00e1lokdo, l\u00e9ka\u0159i a pacienti zaznamenali v t\u00e9to oblasti velk\u00fd posun, a to nejen v l\u00e9\u010db\u011b, ale i na poli diagnostiky s vyu\u017eit\u00edm genetiky. U heredit\u00e1rn\u00edho angioed\u00e9mu se rovn\u011b\u017e m\u011bn\u00ed prost\u0159ed\u00ed pro \u00fahradu l\u00e9k\u016f a pacienti maj\u00ed tak\u00e9 st\u00e1le v\u011bt\u0161\u00ed podporu ze strany pacientsk\u00fdch organizac\u00ed. <\/p>\n","protected":false},"author":48,"featured_media":8536,"menu_order":0,"template":"","meta":{"_links_to":"","_links_to_target":""},"pressroom_category":[],"pressroom_tag":[204],"class_list":["post-11061","pressroom","type-pressroom","status-publish","has-post-thumbnail","hentry","pressroom_tag-zdravi"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>V\u00fdjime\u010dn\u011b rychl\u00fd v\u00fdvoj v l\u00e9\u010db\u011b heredit\u00e1rn\u00edho angioed\u00e9mu - Havas Prague<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/havas.cz\/pressroom\/vyjimecne-rychly-vyvoj-v-lecbe-hereditarniho-angioedemu\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"V\u00fdjime\u010dn\u011b rychl\u00fd v\u00fdvoj v l\u00e9\u010db\u011b heredit\u00e1rn\u00edho angioed\u00e9mu - Havas Prague\" \/>\n<meta property=\"og:description\" content=\"Heredit\u00e1rn\u00ed angioed\u00e9m (HAE) je jedn\u00edm z 8 000 vz\u00e1cn\u00fdch genetick\u00fdch onemocn\u011bn\u00ed.1 Projevuje se bolestiv\u00fdmi, nesv\u011bdiv\u00fdmi a opakuj\u00edc\u00edmi se otoky podko\u017e\u00ed a sliznic na r\u016fzn\u00fdch \u010d\u00e1stech t\u011bla2 a pro pacienta p\u0159edstavuje velkou a\u017e \u017eivot ohro\u017euj\u00edc\u00ed z\u00e1t\u011b\u017e. 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