{"id":7428,"date":"2020-02-07T16:14:08","date_gmt":"2020-02-07T14:14:08","guid":{"rendered":"https:\/\/havas.cz\/?post_type=pressroom&p=7428"},"modified":"2020-10-14T10:22:27","modified_gmt":"2020-10-14T08:22:27","slug":"hereditarni-angioedem-otoky-ktere-cloveka-ze-dne-na-den-zmeni-2","status":"publish","type":"pressroom","link":"https:\/\/havas.cz\/en\/pressroom\/hereditarni-angioedem-otoky-ktere-cloveka-ze-dne-na-den-zmeni-2\/","title":{"rendered":"Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 otoky, kter\u00e9 \u010dlov\u011bka ze dne na den zm\u011bn\u00ed"},"content":{"rendered":"

V\u00a0p\u0159\u00edpad\u011b otok\u016f krku a\u00a0d\u00fdchac\u00edch cest je pacient bezprost\u0159edn\u011b ohro\u017een na \u017eivot\u011b. Otoky tr\u00e1vic\u00edcho syst\u00e9mu zase zp\u016fsobuj\u00ed siln\u00e9 bolesti a mohou b\u00fdt myln\u011b pova\u017eov\u00e1ny nap\u0159\u00edklad za z\u00e1n\u011bt slep\u00e9ho st\u0159eva a v\u00e9st ke zbyte\u010dn\u00e9mu chirurgick\u00e9mu z\u00e1kroku. Negativn\u011b ale do \u017eivota zas\u00e1hnou i znenad\u00e1n\u00ed p\u0159ich\u00e1zej\u00edc\u00ed otoky kon\u010detin a jin\u00fdch \u010d\u00e1st\u00ed t\u011bla. Pr\u00e1v\u011b vz\u00e1cnost onemocn\u011bn\u00ed vede k\u00a0tomu, \u017ee informovanost o n\u011bm je mnohdy n\u00edzk\u00e1, a diagn\u00f3za tak m\u016f\u017ee trvat i n\u011bkolik let.2,3<\/sup> P\u0159itom se jedn\u00e1 o natolik z\u00e1va\u017en\u00e9 onemocn\u011bn\u00ed, \u017ee se \u0159ad\u00ed mezi t\u0159i diagn\u00f3zy bez finan\u010dn\u00edho stropu l\u00e9\u010dby.4<\/sup> P\u0159\u00edslibem je nyn\u00ed nov\u00fd typ preventivn\u00ed l\u00e9\u010dby, je\u017e je pova\u017eov\u00e1na za zlomovou. Jej\u00ed dostupnost pro \u010desk\u00e9 pacienty je v\u00a0tuto chv\u00edli projedn\u00e1v\u00e1na se zdravotn\u00edmi poji\u0161\u0165ovnami.<\/p>\n

Heredit\u00e1rn\u00ed angioed\u00e9m je d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed,2<\/sup> kter\u00e9 se v\u00a0populaci vyskytuje cca u\u00a0jednoho z\u00a050\u00a0000 a\u017e 150\u00a0000\u00a0obyvatel.5<\/sup> V\u00a0\u010cesk\u00e9 republice se s\u00a0n\u00edm k\u00a0roku 2018 l\u00e9\u010dilo 162 pacient\u016f, co\u017e je dle p\u0159edpokl\u00e1dan\u00e9ho v\u00fdskytu jen \u010d\u00e1st v\u0161ech p\u0159\u00edpad\u016f.6<\/sup> P\u0159es sv\u016fj z\u00e1sadn\u00ed dopad na \u017eivot po str\u00e1nce fyzick\u00e9 i psychick\u00e9 nem\u011blo doposud onemocn\u011bn\u00ed dostate\u010dnou pozornost ve\u0159ejnosti a mo\u017en\u00e1 i \u0159ady l\u00e9ka\u0159\u016f.2 Kv\u016fli do\u010dasn\u00fdm otok\u016fm podko\u017e\u00ed a sliznic je toti\u017e heredit\u00e1rn\u00ed angioed\u00e9m \u010dasto zam\u011b\u0148ov\u00e1n s\u00a0alergiemi, a to i p\u0159esto, \u017ee nesv\u011bd\u00ed.3<\/sup><\/p>\n

Nemoc se m\u016f\u017ee projevit v\u00a0jak\u00e9mkoli v\u011bku. V\u00a0\u010cesk\u00e9 republice nej\u010dast\u011bji kolem 17 let.5<\/sup> V\u00a0sou\u010dasn\u00e9 dob\u011b maj\u00ed \u010de\u0161t\u00ed pacienti k\u00a0dispozici pouze tzv. z\u00e1chrannou l\u00e9\u010dbu pro akutn\u00ed zal\u00e9\u010den\u00ed, ta je ale hrazena jen pro t\u0159i nejz\u00e1va\u017en\u011bj\u0161\u00ed typy otok\u016f.7<\/sup> V\u00fdsledkem tak m\u016f\u017ee b\u00fdt \u017eivot v\u00a0neust\u00e1l\u00e9 obav\u011b, kdy p\u0159ijde dal\u0161\u00ed otok, pro jeho\u017e tlumen\u00ed nen\u00ed z\u00e1chrann\u00e1 l\u00e9\u010dba hrazena. Jedna z\u00a0\u010desk\u00fdch pacientek nap\u0159\u00edklad prod\u011blala 72 zaznamenan\u00fdch otok\u016f za rok, co\u017e je v pr\u016fm\u011bru kolem 6 otok\u016f za m\u011bs\u00edc,8<\/sup> kter\u00e9 ovliv\u0148uj\u00ed \u017eivot po v\u0161ech str\u00e1nk\u00e1ch.<\/p>\n

Nen\u00ed otok jako otok <\/strong><\/p>\n

V\u00a0p\u0159\u00edpad\u011b heredit\u00e1rn\u00edho angioed\u00e9mu m\u016f\u017ee otok\u016fm p\u0159edch\u00e1zet \u00fanava, bolest sval\u016f nebo vyr\u00e1\u017eka.2<\/sup> Z\u00a0pr\u016fzkumu 21 pacient\u016f vyplynulo, \u017ee jsou spou\u0161t\u011b\u010de otok\u016f \u010dasto nezn\u00e1m\u00e9, mezi zn\u00e1m\u00e9 se \u0159ad\u00ed nap\u0159\u00edklad stres.9<\/sup> Samotn\u00e9 otoky pak p\u0159ich\u00e1zej\u00ed ve form\u011b takzvan\u00e9 ataky. Ataky jsou akutn\u00edmi a\u00a0siln\u00fdmi projevy tohoto onemocn\u011bn\u00ed. Otoky se zpravidla rozv\u00edjej\u00ed pomalu. Nejedn\u00e1 se o tak rychlou reakci jako nap\u0159\u00edklad u alergika po bodnut\u00ed v\u010delou. Zhor\u0161uj\u00ed se b\u011bhem 12\u201336 hodin a ustupuj\u00ed do 2\u20135 dn\u016f. Jedin\u011b co nejrychlej\u0161\u00ed zal\u00e9\u010den\u00ed p\u0159ich\u00e1zej\u00edc\u00edho otoku zabr\u00e1n\u00ed jeho pln\u00e9mu rozvinut\u00ed.2<\/sup>\u201eAtaky jsou pro \u017eivot pacienta i jeho rodinu velkou z\u00e1t\u011b\u017e\u00ed, a to nejen fyzick\u00e9ho r\u00e1zu, ale i psychick\u00e9ho. Vznik ani lokalizaci v\u011bt\u0161iny atak toti\u017e nelze p\u0159edv\u00eddat. Nav\u00edc se jedn\u00e1 o onemocn\u011bn\u00ed d\u011bdi\u010dn\u00e9. Riziko p\u0159enosu na potomka je 50 %. Pacienti se tak\u00e9 \u010dasto setk\u00e1vaj\u00ed s\u00a0neschopnost\u00ed zvl\u00e1dat studijn\u00ed a pracovn\u00ed z\u00e1t\u011b\u017e nebo s\u00a0omezen\u00edmi p\u0159i volb\u011b zam\u011bstn\u00e1n\u00ed, co\u017e ovliv\u0148uje celkov\u00fd pr\u016fb\u011bh jejich \u017eivota,\u201c <\/em>vysv\u011btluje MUDr. Marta Sobotkov\u00e1 z\u00a0\u00dastavu imunologie 2.\u00a0LF UK a FN Motol. Je-li nap\u0159\u00edklad posti\u017een obli\u010dej, dok\u00e1\u017ee otok do\u010dasn\u011b zcela zm\u011bnit podobu \u010dlov\u011bka a zpravidla je spojen se silnou bolest\u00ed.2<\/sup> \u00a0<\/em><\/p>\n

V\u00a0p\u0159\u00edpad\u011b otok\u016f vni\u0159n\u00edch org\u00e1n\u016f, jako jsou mo\u010dov\u00e9 cesty nebo tr\u00e1vic\u00ed syst\u00e9m, m\u016f\u017ee velmi snadno doj\u00edt k\u00a0z\u00e1m\u011bn\u011b za jin\u00e9 onemocn\u011bn\u00ed. Projevuj\u00ed se toti\u017e silnou bolest\u00ed, nepr\u016fchodnost\u00ed st\u0159ev, zvracen\u00edm, pr\u016fjmem, nad\u00fdm\u00e1n\u00edm \u010di jin\u00fdmi nespecifick\u00fdmi p\u0159\u00edznaky.10<\/sup> Otoky b\u0159icha mohou b\u00fdt myln\u011b diagnostikov\u00e1ny jako n\u00e1hl\u00e1 p\u0159\u00edhoda b\u0159i\u0161n\u00ed a pacient tak m\u016f\u017ee b\u00fdt nap\u0159\u00edklad zbyte\u010dn\u011b operov\u00e1n.3<\/sup> Rizikov\u00e9 jsou otoky hrtanu, p\u0159\u00edpadn\u011b i kr\u010dn\u00edho \u010d\u00edpku, m\u011bkk\u00e9ho patra a jazyka, kter\u00e9 mohou ohro\u017eovat na \u017eivot\u011b, proto\u017ee hroz\u00ed udu\u0161en\u00ed.10<\/sup><\/p>\n

\u201eOtoky pacienta v\u00fdznamn\u011b omezuj\u00ed a \u010dasto i\u00a0ohro\u017euj\u00ed na \u017eivot\u011b. Na l\u00e9ky obvykle pou\u017e\u00edvan\u00e9 k\u00a0terapii otok\u016f alergick\u00fdch tyto angioed\u00e9my nereaguji\u00ed a jejich l\u00e9\u010dba vy\u017eaduje pod\u00e1n\u00ed l\u00e9\u010dby specifick\u00e9. Aktu\u00e1ln\u011b je ov\u0161em hrazena pouze akutn\u00ed l\u00e9\u010dba otok\u016f b\u0159icha, obli\u010deje a d\u00fdchac\u00edch cest, kter\u00e9 jsou \u017eivot ohro\u017euj\u00edc\u00ed a velice bolestiv\u00e9. Tuto pozornost nemaj\u00ed dal\u0161\u00ed typy otok\u016f, kter\u00e9 jsou takt\u00e9\u017e z\u00e1va\u017en\u00e9 a velmi limituj\u00edc\u00ed,<\/em>\u201c vysv\u011btluje MUDr. Marta Sobotkov\u00e1.\u00a0<\/strong><\/p>\n

L\u00e9\u010dba heredit\u00e1rn\u00edho angioed\u00e9mu v\u00a0\u010cesk\u00e9 republice<\/strong><\/p>\n

V\u00a0\u010cesk\u00e9 republice je l\u00e9\u010dba heredit\u00e1rn\u00edho angioed\u00e9mu soust\u0159ed\u011bna do \u010dty\u0159 specializovan\u00fdch center.8<\/sup> Jejich mo\u017enosti profylaktick\u00e9 neboli preventivn\u00ed l\u00e9\u010dby nebyly doposud velk\u00e9. To se m\u00e1 ale v\u00a0n\u00e1sleduj\u00edc\u00edch m\u011bs\u00edc\u00edch zm\u011bnit, p\u0159ich\u00e1z\u00ed toti\u017e zcela nov\u00e1 preventivn\u00ed l\u00e9\u010dba. D\u00edky p\u0159\u00edstupu V\u0161eobecn\u00e9 zdravotn\u00ed poji\u0161\u0165ovny se s\u00a0n\u00ed v\u00a0p\u0159edstihu za\u010dal l\u00e9\u010dit ji\u017e prvn\u00ed pacient v \u010cesk\u00e9 republice, kter\u00e9mu ji poji\u0161\u0165ovna pln\u011b hrad\u00ed<\/p>\n

\u201eV\u00a0\u010cR nyn\u00ed pro pacienty existuje modern\u00ed l\u00e9\u010dba pouze pro akutn\u00ed ataky, kter\u00e1 se aplikuje pomoc\u00ed injekce a je dostupn\u00e1 na specializovan\u00fdch pracovi\u0161t\u00edch v\u00a0Praze, Brn\u011b, Hradci Kr\u00e1lov\u00e9 a Plzni, i ta je ov\u0161em omezena pouze na ur\u010dit\u00fd typ atak. Na\u0161\u00ed snahou je v\u0161ak nejen l\u00e9\u010dba akutn\u00edch stav\u016f, ale i\u00a0mo\u017enost jim p\u0159edch\u00e1zet, a to formou preventivn\u00ed l\u00e9\u010dby. Mo\u017enosti prevence byly v\u00a0\u010cesk\u00e9 republice doposud omezen\u00e9. Nyn\u00ed je ale celosv\u011btov\u011b o\u010dek\u00e1v\u00e1no zaveden\u00ed nov\u00e9, modern\u00ed preventivn\u00ed l\u00e9\u010dby, kter\u00e1 by se mohla pozitivn\u011b dotknout i \u010desk\u00fdch pacient\u016f. Tato l\u00e9\u010dba se pod\u00e1v\u00e1 ka\u017ed\u00e9 dva t\u00fddny a\u017e jednou m\u011bs\u00ed\u010dn\u011b formou injekce a jej\u00edm p\u0159\u00edslibem je v\u00fdrazn\u00e9 sn\u00ed\u017een\u00ed po\u010dtu atak u pacient\u016f, v n\u011bkter\u00fdch p\u0159\u00edpadech pak i jejich \u00fapln\u00e1 absence, co\u017e je zcela pr\u016flomov\u00e9,\u201c <\/em>popisuje MUDr. Marta Sobotkov\u00e1.<\/p>\n

Heredit\u00e1rn\u00ed angioed\u00e9m je z\u00e1va\u017en\u00e9 onemocn\u011bn\u00ed, kter\u00e9 je nyn\u00ed pro v\u011bt\u0161inu spole\u010dnosti velkou nezn\u00e1mou. V\u011bt\u0161\u00ed pov\u011bdom\u00ed o problematice by v\u0161ak mohlo p\u0159in\u00e9st nejen v\u011bt\u0161\u00ed pochopen\u00ed pro pacienty a jejich rodiny ze strany okol\u00ed, ale p\u0159edev\u0161\u00edm zd\u016fraznit pot\u0159ebu adekv\u00e1tn\u00edch medic\u00ednsk\u00fdch \u0159e\u0161en\u00ed v\u0161em pacient\u016fm.<\/p>\n

Kontakt pro m\u00e9dia: <\/strong><\/p>\n

Mark\u00e9ta Stillerov\u00e1 (Hrab\u00e1nkov\u00e1), Senior PR Manager, Havas, 702\u00a0213\u00a0341, marketa.stillerova@havaspr.com<\/a><\/p>\n

Michaela Jura\u010d\u00e1kov\u00e1, PR Executive, Havas, 602 766\u00a0398, michaela.juracakova@havaspr.com<\/a>\u00a0<\/strong><\/p>\n

Zdroje:<\/strong><\/p>\n

    \n
  1. \u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. Co je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed. (online). Dostupn\u00e9 z: http:\/\/vzacna-onemocneni.cz\/vzacna-onemocneni\/co-je-vzacne-onemocneni.html<\/a><\/li>\n
  2. KR\u010cMOV\u00c1, Irena, 2017. Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 trendy v l\u00e9\u010db\u011b. Intern\u00ed Medic\u00edna<\/em> [online]. 9(3), s. 131\u2013137 [cit. 11. 11. 2019]. Dostupn\u00e9 z: https:\/\/www.internimedicina.cz\/pdfs\/int\/2017\/03\/06.pdf<\/a>.<\/li>\n
  3. KR\u00c1L\u00cd\u010cKOV\u00c1, Pavl\u00edna, 2016. Heredit\u00e1rn\u00ed angioed\u00e9m a jeho l\u00e9\u010dba. Remedia [online]. 14(6), s. 362\u2013364 [cit. 12.\u00a011. 2019]. Dostupn\u00e9 z: http:\/\/www.remedia.cz\/Okruhy-temat\/Hematologie\/Hereditarni-angioedem-a-jeho-lecba\/8-15-27S.magarticle.aspx<\/a>.<\/li>\n
  4. \u00dahradov\u00e1 vyhl\u00e1\u0161ka pro rok 2020 (ofici\u00e1ln\u00ed publikace ze sb\u00edrky z\u00e1kon\u016f), vyhl\u00e1\u0161ka \u010d. 268\/2019, p\u0159\u00edloha \u010d. 1, bod 2.2.1, str.7<\/li>\n
  5. KOV\u00c1\u010cOV\u00c1, Petra, 2019. Poji\u0161\u0165ovny mnohdy vysly\u0161\u00ed sp\u00ed\u0161e pacienty ne\u017e l\u00e9ka\u0159e. In: Pro l\u00e9ka\u0159e<\/em> [online]. 1. 5. [cit. 18. 11. 2019]. Dostupn\u00e9 z: https:\/\/www.prolekare.cz\/tema\/primarni-imunodeficience\/detail\/pojistovny-mnohdy-vyslysi-spise-pacienty-nez-lekare-112470<\/a><\/li>\n
  6. S\u00daKL. Datab\u00e1ze l\u00e9k\u016f. (online). Dostupn\u00e9 z: http:\/\/www.sukl.cz\/modules\/medication\/detail.php?code=0500220&tab=prices<\/a><\/li>\n
  7. LITZMAN, Ji\u0159\u00ed et al., 2018. Heredit\u00e1rn\u00ed angioed\u00e9m laryngealn\u00ed ataky: data z N\u00e1rodn\u00edho registru prim\u00e1rn\u00edch imunodeficienc\u00ed. 20(2), str. 85.<\/li>\n
  8. HANZL\u00cdKOV\u00c1, Jana, 2013. Heredit\u00e1rn\u00ed angioed\u00e9m. Medical Tribune. 1. vyd\u00e1n\u00ed, s. 24\u201325<\/li>\n
  9. N\u00e1rodn\u00ed registr prim\u00e1rn\u00edch imunodeficienc\u00ed v\u00a0\u010cesk\u00e9 republice, \u010derven 2019, 21 respondent\u016f<\/li>\n
  10. Ob\u010dansk\u00e9 sdru\u017een\u00ed na ochranu pacient\u016f s\u00a0heridit\u00e1rn\u00edm angioed\u00e9mem. Diagnostika HAE. (online). Dostupn\u00e9 z: http:\/\/www.hae-imuno.cz\/diagnostika\/<\/a><\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

    Heredit\u00e1rn\u00ed angioed\u00e9m je jedn\u00edm z 8000 vz\u00e1cn\u00fdch genetick\u00fdch onemocn\u011bn\u00ed. Postihuje jedince na cel\u00e9m sv\u011bt\u011b, p\u0159i\u010dem\u017e \u010cesk\u00e1 republika nen\u00ed v\u00fdjimkou.1,2<\/sup> Jedn\u00e1 se o z\u00e1va\u017en\u00e9 onemocn\u011bn\u00ed \u0159azen\u00e9 mezi vrozen\u00e9 poruchy imunitn\u00edho syst\u00e9mu, kter\u00e9 dok\u00e1\u017ee \u010dlov\u011bka ze dne na den zm\u011bnit k nepozn\u00e1n\u00ed. Genetick\u00e1 porucha toti\u017e vede ke zv\u00fd\u0161en\u00e9 propustnosti c\u00e9v a zp\u016fsobuje tak bolestiv\u00e9 a rozs\u00e1hl\u00e9 otoky. Ty sice mohou p\u0159ipom\u00ednat otoky alergick\u00e9ho p\u016fvodu, ale mechanismus jejich vzniku je odli\u0161n\u00fd a li\u0161\u00ed se tak\u00e9 jejich l\u00e9\u010dba. Chybn\u00e1 z\u00e1m\u011bna otok\u016f p\u0159i heridit\u00e1rn\u00edm angioed\u00e9mu za alergickou reakci je velice nebezpe\u010dn\u00e1.<\/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-7428","pressroom","type-pressroom","status-publish","has-post-thumbnail","hentry","pressroom_tag-zdravi"],"yoast_head":"\nHeredit\u00e1rn\u00ed angioed\u00e9m \u2013 otoky, kter\u00e9 \u010dlov\u011bka ze dne na den zm\u011bn\u00ed - 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\/hereditarni-angioedem-otoky-ktere-cloveka-ze-dne-na-den-zmeni-2\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 otoky, kter\u00e9 \u010dlov\u011bka ze dne na den zm\u011bn\u00ed - Havas Prague\" \/>\n<meta property=\"og:description\" content=\"Heredit\u00e1rn\u00ed angioed\u00e9m je jedn\u00edm z 8000 vz\u00e1cn\u00fdch genetick\u00fdch onemocn\u011bn\u00ed. 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