{"id":11539,"date":"2021-02-15T10:00:26","date_gmt":"2021-02-15T08:00:26","guid":{"rendered":"https:\/\/havas.cz\/?post_type=pressroom&p=11539"},"modified":"2021-02-22T11:38:36","modified_gmt":"2021-02-22T09:38:36","slug":"28-unora-je-den-vzacnych-onemocneni-ta-si-ziskavaji-stale-vetsi-pozornost","status":"publish","type":"pressroom","link":"https:\/\/havas.cz\/en\/pressroom\/28-unora-je-den-vzacnych-onemocneni-ta-si-ziskavaji-stale-vetsi-pozornost\/","title":{"rendered":"28. \u00fanora je Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Ta si z\u00edsk\u00e1vaj\u00ed st\u00e1le v\u011bt\u0161\u00ed pozornost"},"content":{"rendered":"

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 t\u00edm souvis\u00ed i 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 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.9<\/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 dopl\u0148oval vrozen\u011b chyb\u011bj\u00edc\u00ed l\u00e1tku v\u00a0organismu pacienta.10,11 <\/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, kter\u00e1 br\u00e1n\u00ed pln\u00e9mu rozvoji otok\u016f. S vazbou na l\u00e9\u010dbu u\u00a0n\u00e1s vznikla\u00a0\u010dty\u0159i specializovan\u00e1 centra\u00a0pro l\u00e9\u010dbu HAE v\u202fPraze, Brn\u011b, Plzni a Hradci Kr\u00e1lov\u00e9 a l\u00e9\u010dba se mohla aplikovat pouze v nich.8<\/sup><\/p>\n

\u201eBylo to pro n\u00e1s l\u00e9ka\u0159e, ale i pacienty zlomov\u00e9. M\u011bli jsme k\u00a0dispozici adekv\u00e1tn\u00ed l\u00e9\u010dbu a d\u00edky vzniku center se mohl v\u00fdrazn\u011b zv\u00fd\u0161it standard p\u00e9\u010de o 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 byla vedena nap\u0159\u00edklad na ORL, revmatologii, intern\u00edch odd\u011blen\u00edch \u010di v\u00a0alergologick\u00fdch ambulanc\u00edch. Pov\u011bdom\u00ed o t\u00e9to vz\u00e1cn\u00e9 diagn\u00f3ze bylo mal\u00e9 a 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 rovn\u011b\u017e vznikl i 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 \u00dastavu imunologie a alergologie FN Hradec Kr\u00e1lov\u00e9.<\/p>\n

Preventivn\u00ed mo\u017enosti, kter\u00e9 mohou b\u00fdt \u0159e\u0161en\u00edm i pro \u010desk\u00e9 pacienty<\/strong><\/p>\n

Posledn\u00edch deset let maj\u00ed pacienti s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem v \u010cR k\u00a0dispozici akutn\u00ed z\u00e1chrannou l\u00e9\u010dbu, kter\u00e1 v\u00fdrazn\u011b zamezuje rozvoji otok\u016f.8<\/sup> \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 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 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 to v\u00a0oblasti hrdla, obli\u010deje a 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

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. \u201e<\/em>Razantn\u011b se zrychlil v\u00fdzkum a 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 nenad\u00e1l\u00e9mu vzniku otok\u016f v\u016fbec nedoch\u00e1zelo. Ve v\u00fdzkumu jsou i dal\u0161\u00ed formy terapie a 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 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. Snahou je rovn\u011b\u017e zajistit p\u00e9\u010di o cel\u00e9 rodiny s\u202ftouto\u00a0z\u00e1va\u017enou\u00a0nemoc\u00ed. Jeliko\u017e jde o geneticky d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, doporu\u010duje se vyhled\u00e1vat dal\u0161\u00ed potenci\u00e1ln\u00ed pacienty mezi \u010dleny rodiny,\u00a0<\/strong>\u010d\u00edm\u017e se zvy\u0161uje v\u010dasn\u00e1 i\u00a0spr\u00e1vn\u00e1 diagnostika nemoci.8<\/sup><\/p>\n

D\u016fle\u017eit\u00e1 role pacientsk\u00fdch organizac\u00ed a cesta k\u00a0legislativn\u00edm zm\u011bn\u00e1m<\/strong><\/p>\n

Celosv\u011btov\u011b i lok\u00e1ln\u011b dnes vznikaj\u00ed pacientsk\u00e9 organizace, kter\u00e9 se sdru\u017euj\u00ed pod glob\u00e1ln\u00ed pacientskou organizaci HAE International. 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 mlad\u00fdch lid\u00ed, kte\u0159\u00ed maj\u00ed v\u0161e p\u0159ed sebou.12<\/sup> Mimo tuto organizaci je u n\u00e1s i Ob\u010dansk\u00e9 sdru\u017een\u00ed Imunodeficitn\u00edch pacient\u016f HAE\/AAE, kter\u00e9 zast\u0159e\u0161uje ve\u0161ker\u00e9 pacienty s\u00a0HAE, mlad\u00e9 i star\u0161\u00ed.13<\/sup> Z\u00e1rove\u0148 se u 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 HAE. Jedn\u00e1 se o l\u00e9ky, kter\u00e9 jen t\u011b\u017ece vstupovaly do klasick\u00fdch \u00fahradov\u00fdch syst\u00e9m\u016f a 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 to pozitivn\u011b ovliv\u0148uje i samotnou kvalitu jejich \u017eivota. V\u00edce o\u00a0heredit\u00e1rn\u00edm angioed\u00e9mu najdete na nov\u011b vytvo\u0159en\u00fdch webov\u00fdch str\u00e1nk\u00e1ch pro pacienty www.poznejhae.cz<\/a>.<\/p>\n

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

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

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

    \n
  1. Rare disease day. What is rare disesase day?<\/em> [online]. Dostupn\u00e9 z: https:\/\/www.rarediseaseday.org\/article\/what-is-rare-disease-day<\/a><\/li>\n
  2. \u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed. Co je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed<\/em> [online]. Dostupn\u00e9 z: http:\/\/vzacna-onemocneni.cz\/vzacna-onemocneni\/co-je-vzacne-onemocneni.html<\/a><\/li>\n
  3. L\u00e9ka\u0159sk\u00e1 fakulta UK. Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed <\/em>[online]. Dostupn\u00e9 z. https:\/\/www.lf1.cuni.cz\/vzacna-onemocneni-v-cechach<\/a><\/li>\n
  4. \u010cZSO. Obyvatelstvo Jiho\u010desk\u00e9ho kraje v\u00a01. pololet\u00ed 2020 <\/em>[online]. Dostupn\u00e9 z: https:\/\/www.czso.cz\/csu\/xc\/obyvatelstvo-jihoceskeho-kraje-v-1-pololeti-2020<\/a><\/li>\n
  5. Novela z\u00e1kona \u010d. 48\/1997 Sb. o ve\u0159ejn\u00e9m zdravotn\u00edm poji\u0161t\u011bn\u00ed<\/em> [online]. Dostupn\u00e9 z: https:\/\/www.mzcr.cz\/wp-content\/uploads\/2020\/07\/Novela_48_shrnut%C3%AD.pdf<\/a><\/li>\n
  6. KADE\u0158\u00c1VKOV\u00c1, Lenka. L\u00e9\u010dba vz\u00e1cn\u00fdch onemocn\u011bn\u00ed by m\u011bla b\u00fdt dostupn\u011bj\u0161\u00ed, do sn\u011bmovny m\u00ed\u0159\u00ed novela z\u00e1kona \u010d. 48\/1997 Sb. cz <\/em>[online]. Dostupn\u00e9 z: https:\/\/www.prolekare.cz\/novinky\/lecba-vzacnych-onemocneni-by-mela-byt-dostupnejsi-do-snemovny-miri-novela-zakona-c-48-1997-sb-115144<\/a><\/li>\n
  7. Sn\u011bmovn\u00ed tisk 992: Novela z. o ve\u0159ejn\u00e9m zdravotn\u00edm poji\u0161t\u011bn\u00ed \u2013 EU <\/em>[online]. <\/em>Dostupn\u00e9 z: https:\/\/www.psp.cz\/sqw\/historie.sqw?o=8&t=992<\/a><\/li>\n
  8. KR\u010cMOV\u00c1, Irena. Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 trendy v l\u00e9\u010db\u011b. Intern\u00ed Medic\u00edna<\/em> [online]. 2017; 9(3): 131\u2013137 [cit. 11. 11. 2019]. Dostupn\u00e9 z: https:\/\/www.internimedicina.cz\/pdfs\/int\/2017\/03\/06.pdf<\/a>.<\/li>\n
  9. MOTOL IN. Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 \u017eivot s\u00a0otoky<\/em>. Duben 2020.<\/li>\n
  10. REMATTA, M., GIBBS, J.G., PRATT, E.L., STOUGHTON, T.R., CRAIG, T.J. Fresh frozen plasma for the treatment of hereditary angioedema.\u00a0Ann Allergy Asthma Immunol<\/em>.\u00a02007; 98(4): 383\u2013388.<\/li>\n
  11. WINNEWISSER, J., ROSSI, M., PATH, P. Type I hereditary angioedema: variability of clinical presentation and course within two large kindreds.\u00a0J\u00a0Intern Med<\/em>.\u00a01997; 241: 39\u201346.<\/li>\n
  12. HAE Junior. O n\u00e1s <\/em>[online].<\/em> Dostupn\u00e9 z: https:\/\/haejunior.cz\/o-nas\/<\/a><\/li>\n
  13. HAE Imuno. O sdru\u017een\u00ed <\/em>[online]. Dostupn\u00e9 z: https:\/\/www.hae-imuno.cz\/o-sdruzeni\/<\/a><\/li>\n<\/ol>\n

     <\/p>\n","protected":false},"excerpt":{"rendered":"

    Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se kon\u00e1 ka\u017edoro\u010dn\u011b posledn\u00ed \u00fanorov\u00fd den.1<\/sup> V\u00edce ne\u017e 8 000 vz\u00e1cn\u00fdch onemocn\u011bn\u00ed2<\/sup> si proto letos p\u0159ipom\u00edn\u00e1me 28. \u00fanora s c\u00edlem p\u0159ibl\u00ed\u017eit laick\u00e9 i odborn\u00e9 ve\u0159ejnosti, jak tyto diagn\u00f3zy mohou z\u00e1sadn\u011b ovlivnit \u017eivot pacient\u016f. V \u010cesk\u00e9 republice trp\u00ed m\u00e1lo zn\u00e1m\u00fdmi nemocemi p\u0159es 600 tis\u00edc lid\u00ed3<\/sup>, co\u017e m\u016f\u017eeme p\u0159irovnat k po\u010dtu obyvatel Jiho\u010desk\u00e9ho kraje.4<\/sup> P\u0159esto\u017ee medic\u00edna neust\u00e1le vyv\u00edj\u00ed terapie na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed, vstup nov\u00fdch, modern\u00edch l\u00e9k\u016f na \u010desk\u00fd trh b\u00fdv\u00e1 slo\u017eit\u00fd a pomal\u00fd.5<\/sup> \u00dahradov\u00fd syst\u00e9m zat\u00edm neumo\u017e\u0148uje pro tyto l\u00e9ky vstup do \u00fahrad, a k pacient\u016fm se tak \u010dasto dost\u00e1vaj\u00ed slo\u017eit\u011b a\u017e po individu\u00e1ln\u00edm schv\u00e1len\u00ed l\u00e9\u010dby zdravotn\u00ed poji\u0161\u0165ovnou.6<\/sup> To se v\u0161ak m\u016f\u017ee brzy zm\u011bnit d\u00edky novele z\u00e1kona o ve\u0159ejn\u00e9m zdravotn\u00edm poji\u0161t\u011bn\u00ed, kterou ji\u017e poslanci schv\u00e1lili v prvn\u00edm \u010dten\u00ed a dosud tak existuje mo\u017enost, \u017ee z\u00e1kon bude p\u0159ijat je\u0161t\u011b tento rok.5,7<\/sup>
    \nVelk\u00fd miln\u00edk ohledn\u011b \u00fahrady l\u00e9k\u016f pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed se t\u00fdk\u00e1 i diagn\u00f3zy heredit\u00e1rn\u00edho angioed\u00e9mu (HAE). Dan\u00e1 nemoc je \u017eivot ohro\u017euj\u00edc\u00ed a projevuje se bolestiv\u00fdmi a opakuj\u00edc\u00edmi se otoky na r\u016fzn\u00fdch \u010d\u00e1stech t\u011bla, kter\u00e9 dok\u00e1\u017eou zm\u011bnit \u010dlov\u011bka k nepozn\u00e1n\u00ed.8<\/sup> <\/p>\n","protected":false},"author":48,"featured_media":8544,"menu_order":0,"template":"","meta":{"_links_to":"","_links_to_target":""},"pressroom_category":[],"pressroom_tag":[204],"class_list":["post-11539","pressroom","type-pressroom","status-publish","has-post-thumbnail","hentry","pressroom_tag-zdravi"],"yoast_head":"\n28. \u00fanora je Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Ta si z\u00edsk\u00e1vaj\u00ed st\u00e1le v\u011bt\u0161\u00ed pozornost - 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\/28-unora-je-den-vzacnych-onemocneni-ta-si-ziskavaji-stale-vetsi-pozornost\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"28. \u00fanora je Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Ta si z\u00edsk\u00e1vaj\u00ed st\u00e1le v\u011bt\u0161\u00ed pozornost - Havas Prague\" \/>\n<meta property=\"og:description\" content=\"Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se kon\u00e1 ka\u017edoro\u010dn\u011b posledn\u00ed \u00fanorov\u00fd den.1 V\u00edce ne\u017e 8 000 vz\u00e1cn\u00fdch onemocn\u011bn\u00ed2 si proto letos p\u0159ipom\u00edn\u00e1me 28. \u00fanora s c\u00edlem p\u0159ibl\u00ed\u017eit laick\u00e9 i odborn\u00e9 ve\u0159ejnosti, jak tyto diagn\u00f3zy mohou z\u00e1sadn\u011b ovlivnit \u017eivot pacient\u016f. V \u010cesk\u00e9 republice trp\u00ed m\u00e1lo zn\u00e1m\u00fdmi nemocemi p\u0159es 600 tis\u00edc lid\u00ed3, co\u017e m\u016f\u017eeme p\u0159irovnat k po\u010dtu obyvatel Jiho\u010desk\u00e9ho kraje.4 P\u0159esto\u017ee medic\u00edna neust\u00e1le vyv\u00edj\u00ed terapie na vz\u00e1cn\u00e1 onemocn\u011bn\u00ed, vstup nov\u00fdch, modern\u00edch l\u00e9k\u016f na \u010desk\u00fd trh b\u00fdv\u00e1 slo\u017eit\u00fd a pomal\u00fd.5 \u00dahradov\u00fd syst\u00e9m zat\u00edm neumo\u017e\u0148uje pro tyto l\u00e9ky vstup do \u00fahrad, a k pacient\u016fm se tak \u010dasto dost\u00e1vaj\u00ed slo\u017eit\u011b a\u017e po individu\u00e1ln\u00edm schv\u00e1len\u00ed l\u00e9\u010dby zdravotn\u00ed poji\u0161\u0165ovnou.6 To se v\u0161ak m\u016f\u017ee brzy zm\u011bnit d\u00edky novele z\u00e1kona o ve\u0159ejn\u00e9m zdravotn\u00edm poji\u0161t\u011bn\u00ed, kterou ji\u017e poslanci schv\u00e1lili v prvn\u00edm \u010dten\u00ed a dosud tak existuje mo\u017enost, \u017ee z\u00e1kon bude p\u0159ijat je\u0161t\u011b tento rok.5,7 Velk\u00fd miln\u00edk ohledn\u011b \u00fahrady l\u00e9k\u016f pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed se t\u00fdk\u00e1 i diagn\u00f3zy heredit\u00e1rn\u00edho angioed\u00e9mu (HAE). 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