{"id":8935,"date":"2020-05-12T13:08:00","date_gmt":"2020-05-12T11:08:00","guid":{"rendered":"https:\/\/havas.cz\/?post_type=pressroom&p=8935"},"modified":"2020-10-14T10:04:26","modified_gmt":"2020-10-14T08:04:26","slug":"hereditarni-angioedem-zavazna-nemoc-pro-kterou-je-v-cr-lecba-i-pomahajici-pacientska-organizace","status":"publish","type":"pressroom","link":"https:\/\/havas.cz\/en\/pressroom\/hereditarni-angioedem-zavazna-nemoc-pro-kterou-je-v-cr-lecba-i-pomahajici-pacientska-organizace\/","title":{"rendered":"Heredit\u00e1rn\u00ed angioed\u00e9m \u2013 z\u00e1va\u017en\u00e1 nemoc, pro kterou je v \u010cR l\u00e9\u010dba i pom\u00e1haj\u00edc\u00ed pacientsk\u00e1 organizace"},"content":{"rendered":"

Mezin\u00e1rodn\u00ed den HAE letos u\u017e dev\u00e1t\u00fdm rokem po\u0159\u00e1d\u00e1 glob\u00e1ln\u00ed pacientsk\u00e1 organizace HAE International, ji\u017e tvo\u0159\u00ed celkem 84 n\u00e1rodn\u00edch pacientsk\u00fdch organizac\u00ed HAE z\u00a0cel\u00e9ho sv\u011bta. Smyslem dne HAE je zajistit v\u011bt\u0161\u00ed pov\u011bdom\u00ed o nemoci, a to nejen u laik\u016f, ale i u odborn\u00edk\u016f, a upozornit na pot\u0159ebu v\u010dasn\u011bj\u0161\u00ed a p\u0159esn\u011bj\u0161\u00ed diagnostiky. Heredit\u00e1rn\u00ed angioed\u00e9m je nemoc\u00ed, se kterou je p\u0159i diagnostice nutn\u00e9 po\u010d\u00edtat. Proto je i snaha o v\u011bt\u0161\u00ed sd\u00edlen\u00ed informac\u00ed mezi specialisty, co\u017e by mohlo v\u00a0d\u016fsledku v\u00e9st pr\u00e1v\u011b k snaz\u0161\u00ed a rychlej\u0161\u00ed diagnostice. D\u016fle\u017eit\u00fdm c\u00edlem je rovn\u011b\u017e pomoci nemocn\u00fdm naj\u00edt odpov\u011bdi na ot\u00e1zky t\u00fdkaj\u00edc\u00ed se HAE a podpo\u0159it v\u0161echny v\u00a0tom, aby jednali s\u00a0vidinou lep\u0161\u00ed budoucnosti.5<\/sup><\/p>\n

\u201eHeredit\u00e1rn\u00ed angioed\u00e9m je onemocn\u011bn\u00ed zp\u016fsoben\u00e9 zv\u00fd\u0161enou propustnost\u00ed c\u00e9v, co\u017e m\u00e1 za n\u00e1sledek rozs\u00e1hl\u00e9 otoky.<\/em> A\u017e u 50 % nemocn\u00fdch se objev\u00ed otoky hrtanu, kter\u00e9, nejsou-li l\u00e9\u010deny, mohou v\u00e9st i k\u00a0udu\u0161en\u00ed. V\u011bt\u0161ina pacient\u016f prod\u011bl\u00e1 tak\u00e9 b\u0159i\u0161n\u00ed otoky, je\u017e jsou n\u011bkdy myln\u011b diagnostikov\u00e1ny jako n\u00e1hl\u00e1 p\u0159\u00edhoda b\u0159i\u0161n\u00ed \u010di z\u00e1n\u011bt slep\u00e9ho st\u0159eva, a na \u0159adu m\u016f\u017ee p\u0159ij\u00edt i zbyte\u010dn\u00e1 operace. Otoky jin\u00fdch \u010d\u00e1st\u00ed t\u011bla jsou rovn\u011b\u017e extr\u00e9mn\u011b vysiluj\u00edc\u00ed a n\u011bkdy tak rozs\u00e1hl\u00e9, \u017ee dok\u00e1\u017e\u00ed \u010dlov\u011bka velice vzhledov\u011b zm\u011bnit. Pacienta v\u00fdznamn\u011b ovliv\u0148uj\u00ed v\u00a0jeho soukrom\u00e9m i pracovn\u00edm \u017eivot\u011b<\/em>. N\u011bkdy jsou chybn\u011b zam\u011b\u0148ov\u00e1ny za alergii,\u201c<\/em> popisuje MUDr. Marta Sobotkov\u00e1 z\u00a0\u00dastavu imunologie 2.\u00a0LF UK a FN Motol. Tyto z\u00e1chvaty obvykle trvaj\u00ed n\u011bkolik dn\u00ed a maj\u00ed velk\u00fd dopad na kvalitu \u017eivota nemocn\u00fdch v\u00a0podob\u011b vynechan\u00fdch dn\u00ed v\u00a0pr\u00e1ci nebo ve \u0161kole v\u00a0d\u00e9lce 17 a\u017e 28 dn\u00ed ro\u010dn\u011b.6<\/sup><\/p>\n

Nov\u00e9 mo\u017enosti pro pacienty s\u00a0HAE v \u010cR<\/strong><\/p>\n

\u0158e\u0161en\u00edm pro relativn\u011b norm\u00e1ln\u00ed \u017eivot lid\u00ed s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem je odpov\u00eddaj\u00edc\u00ed l\u00e9\u010dba. \u201eJe\u0161t\u011b doned\u00e1vna existovala pouze akutn\u00ed z\u00e1chrann\u00e1 l\u00e9\u010dba, kter\u00e1 je i nyn\u00ed hrazena jen pro n\u011bkter\u00e9 typy otok\u016f, a\u010d si zal\u00e9\u010den\u00ed zaslou\u017e\u00ed v\u0161echny druhy otok\u016f, a mo\u017enosti s\u00a0ohledem na terapii preventivn\u00ed nebyly velik\u00e9. Aktu\u00e1ln\u011b v\u0161ak p\u0159ich\u00e1z\u00ed do \u010cesk\u00e9 republiky nov\u00e9 typy preventivn\u00ed l\u00e9\u010dby, kter\u00e9 jsou d\u016fle\u017eit\u00fdm miln\u00edkem jak pro odborn\u00edky, tak i nemocn\u00e9. Jejich c\u00edlem 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 obrovsk\u00e1 zm\u011bna a cesta k\u00a0daleko kvalitn\u011bj\u0161\u00edmu \u017eivotu nemocn\u00fdch, v\u00a0co\u017e v\u0161ichni odborn\u00edci doufaj\u00ed,\u201c<\/em> p\u0159ibli\u017euje MUDr. Marta Sobotkov\u00e1. A\u010d se jedn\u00e1 o\u00a0onemocn\u011bn\u00ed vz\u00e1cn\u00e9 (vyskytuje se cca u\u00a0jednoho z\u00a050\u00a0000 a\u017e 150\u00a0000\u00a0obyvatel), je o n\u011bm pot\u0159eba roz\u0161i\u0159ovat pov\u011bdom\u00ed. P\u0159edpokl\u00e1d\u00e1 se toti\u017e, \u017ee st\u00e1le nejsou diagnostikov\u00e1ni v\u0161ichni pacienti, co\u017e znamen\u00e1, \u017ee nemohou b\u00fdt ani spr\u00e1vn\u011b zal\u00e9\u010deni.7<\/sup> Nemoc tak m\u016f\u017ee nekontrolovateln\u011b ovliv\u0148ovat kvalitu jejich \u017eivota, a dokonce je na n\u011bm ohro\u017eovat.<\/p>\n

\u00a0<\/strong>Nov\u00e1 pacientsk\u00e1 organizace HAE Junior<\/strong><\/p>\n

Negativn\u00ed dopady heredit\u00e1rn\u00edho angioed\u00e9mu na soukrom\u00fd i pracovn\u00ed \u017eivot jsou dle zku\u0161enosti \u0159ady let v\u00fdrazn\u00e9. Lid\u00e9 mohou b\u00fdt oslabeni po fyzick\u00e9 i du\u0161evn\u00ed str\u00e1nce a v\u00fdjimkou nejsou ani deprese. Mimo to m\u016f\u017ee nemoc zap\u0159\u00ed\u010dinit, \u017ee se pacienti mus\u00ed vzd\u00e1t vzd\u011bl\u00e1v\u00e1n\u00ed, pr\u00e1ce nebo obl\u00edben\u00e9 spole\u010densk\u00e9 aktivity. \u017divot s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem tak nen\u00ed jednoduch\u00fd pro dosp\u011bl\u00e9, nato\u017e pro pediatrick\u00e9 pacienty, a pr\u00e1v\u011b proto vznikla iniciativa rodi\u010d\u016f d\u011bt\u00ed s\u00a0touto nemoc\u00ed, kte\u0159\u00ed spole\u010dn\u011b v\u00a0roce 2019 zalo\u017eili neziskovou organizaci HAE Junior. Organizace za\u010dala postupn\u011b fungovat v\u00a0leto\u0161n\u00edm roce a klade si za c\u00edl p\u0159edev\u0161\u00edm zkvalitn\u011bn\u00ed \u017eivota d\u011bt\u00ed a mlad\u00fdch lid\u00ed, kte\u0159\u00ed maj\u00ed cel\u00fd \u017eivot p\u0159ed sebou.4<\/sup><\/p>\n

\u201eU mlad\u00fdch pacient\u016f chceme budovat zdravotn\u00ed gramotnost, aby co nejl\u00e9pe znali svou diagn\u00f3zu, um\u011bli se svou nemoc\u00ed pracovat a dr\u017eet jej\u00ed symptomy pod kontrolou. Takov\u00fd proaktivn\u00ed p\u0159\u00edstup by jim m\u011bl umo\u017enit b\u00fdt nez\u00e1visl\u00ed, osamostatnit se a \u017e\u00edt kvalitn\u011bj\u0161\u00ed \u017eivot. Na\u0161\u00edm p\u0159\u00e1n\u00edm je, aby se c\u00edtili bezpe\u010dn\u011b a byli schopni naplnit sv\u016fj \u017eivotn\u00ed potenci\u00e1l ve \u0161kole, v\u00a0pr\u00e1ci a celkov\u011b v mezilidsk\u00fdch vztaz\u00edch. Nemoc nesm\u00ed ovl\u00e1dat ni\u010d\u00ed \u017eivot. Chceme se inspirovat ze zahrani\u010d\u00ed a pomoci t\u011bmto d\u011btem a mlad\u00fdm pacient\u016fm nau\u010dit se, jak s\u00a0touto nemoc\u00ed \u017e\u00edt plnohodnotn\u011b, nejen ji p\u0159e\u017e\u00edt. Snahou pacientsk\u00e9 organizace HAE Junior je rovn\u011b\u017e zlep\u0161it p\u0159\u00edstup pacient\u016f k\u00a0modern\u00edm l\u00e9k\u016fm, terapi\u00edm a zdravotnick\u00e9 p\u00e9\u010di<\/em>.Akutn\u00ed i preventivn\u00ed l\u00e9\u010dba \u010desk\u00fdch pediatrick\u00fdch pacient\u016f je toti\u017e ve srovn\u00e1n\u00ed s\u00a0mo\u017enostmi dosp\u011bl\u00e9 pacientsk\u00e9 populace nebo ve srovn\u00e1n\u00ed s mo\u017enostmi vrstevn\u00edk\u016f v\u00a0jin\u00fdch zem\u00edch je\u0161t\u011b v\u00edce omezen\u00e1,\u201c<\/em> vysv\u011btluje zakladatelka organizace HAE Junior Camelia Isaic.<\/p>\n

Zdravotn\u00ed str\u00e1nka je u ka\u017ed\u00e9ho nemocn\u00e9ho velmi d\u016fle\u017eit\u00e1, ov\u0161em organizace HAE Junior klade d\u016fraz tak\u00e9 na vzd\u011bl\u00e1n\u00ed pacient\u016f, a proto jim chce nab\u00edzet mo\u017enost spolupracovat s\u00a0u\u010diteli, lektory a dal\u0161\u00edmi specialisty. Ti d\u011btem a ml\u00e1de\u017ei mohou pomoci p\u0159i v\u00fdb\u011bru vzd\u011bl\u00e1v\u00e1n\u00ed a profesn\u00ed dr\u00e1hy s\u00a0ohledem na z\u00e1va\u017enost jejich nemoci. Ve shrnut\u00ed je HAE Junior organizac\u00ed, kter\u00e1 usiluje o spokojen\u00fd \u017eivot pacient\u016f a\u00a0umo\u017e\u0148uje lidem s\u00a0touto nemoc\u00ed se spole\u010dn\u011b setk\u00e1vat a sd\u00edlet zku\u0161enosti. V\u00edce o pacientsk\u00e9 organizaci HAE Junior, z. s., najdete na webov\u00fdch str\u00e1nk\u00e1ch www.haejunior.cz<\/a>.4<\/sup><\/p>\n

Heredit\u00e1rn\u00ed angioed\u00e9m v\u00a0souvislosti s epidemi\u00ed\u00a0covid-19<\/strong><\/p>\n

Heredit\u00e1rn\u00ed angioed\u00e9m je vrozen\u00e9 a chronick\u00e9 onemocn\u011bn\u00ed, u kter\u00e9ho nen\u00ed zv\u00fd\u0161en\u00e1 n\u00e1chylnost k\u00a0infek\u010dn\u00edm nemocem nebo jejich abnorm\u00e1ln\u00edmu pr\u016fb\u011bhu, a proto ji nelze p\u0159edpokl\u00e1dat ani v\u00a0souvislosti s\u00a0epidemi\u00ed covid-19. P\u0159esto, pot\u00fdk\u00e1-li se pacient s\u00a0HAE s\u00a0infekc\u00ed, m\u016f\u017ee se st\u00e1t spou\u0161t\u011b\u010dem ataky, a proto je pot\u0159eba maxim\u00e1ln\u00ed opatrnosti. Sou\u010dasn\u00e1 situace m\u016f\u017ee z\u00e1rove\u0148 vzbuzovat enormn\u00ed stres, kter\u00fd m\u016f\u017ee b\u00fdt v\u00a0p\u0159\u00edpad\u011b pacient\u016f s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem snadn\u00fdm spou\u0161t\u011b\u010dem atak. Pacient\u016fm s\u00a0HAE je tak doporu\u010dov\u00e1no, aby u sebe v\u017edy m\u011bli pot\u0159ebn\u00e9 z\u00e1chrann\u00e9 l\u00e9ky alespo\u0148 v mno\u017estv\u00ed nutn\u00e9m pro zal\u00e9\u010den\u00ed dvou atak. Konkr\u00e9tn\u011b takov\u00e9 l\u00e9ky, kter\u00e9 jsou si schopni aplikovat sami v\u00a0dom\u00e1c\u00edm prost\u0159ed\u00ed i kv\u016fli sou\u010dasn\u00e9mu v\u011bt\u0161\u00edmu zat\u00ed\u017een\u00ed nemocnic a pohotovost\u00ed.8<\/sup><\/p>\n

 <\/p>\n

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

Mark\u00e9ta Stillerov\u00e1, PR Director, 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><\/p>\n

\u00a0<\/strong>Zdroje:<\/strong><\/p>\n

    \n
  1. HAE-IMUNO. Ob\u010dansk\u00e9 sdru\u017een\u00ed na ochranu pacient\u016f s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem. Stav boje proti HAE v\u00a0Evrop\u011b. (online). Dostupn\u00e9 z: http:\/\/hae-imuno.cz\/files\/HAEi-Report-czech.pdf<\/a><\/li>\n
  2. HAE-IMUNO. Ob\u010dansk\u00e9 sdru\u017een\u00ed na ochranu pacient\u016f s\u00a0heredit\u00e1rn\u00edm angioed\u00e9mem. Ud\u00e1losti. (online). Dostupn\u00e9 z: http:\/\/hae-imuno.cz\/novinky\/mezinarodni-den-hae-16-5\/<\/a><\/li>\n
  3. Press release. A global awareness day for a rare life-threatening condition. 2020. (online). Dostupn\u00e9 z: https:\/\/haeday.org\/toolbox\/<\/a><\/li>\n
  4. HAE JUNIOR. 2020. O n\u00e1s. Dostupn\u00e9 z: https:\/\/haejunior.cz\/<\/a><\/li>\n
  5. HAE\u00a0Day\u00a02020.\u00a0Key\u00a0Messages\u00a0and\u00a0Talking\u00a0Points.<\/li>\n
  6. AYG\u00d6REN-P\u00dcRS\u00dcN,\u00a0E., et al.\u00a0Orphanet\u00a0J\u00a0Rare\u00a0Dis<\/em>. 2014; 9: 99.<\/li>\n
  7. 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
  8. HAE JUNIOR. 2020. Doporu\u010den\u00ed pro HAE pacienty v\u202fsouvislosti\u00a0s\u202fepidemi\u00ed COVID-19. 2020. Dostupn\u00e9 z:\u00a0https:\/\/haejunior.cz\/doporuceni-pro-hae-pacienty-v-souvislosti-s-epidemii-covid-19\/<\/a><\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

    Heredit\u00e1rn\u00ed angioed\u00e9m je genetickou poruchou imunitn\u00edho syst\u00e9mu s projevy bolestiv\u00fdch, nesv\u011bdiv\u00fdch a opakuj\u00edc\u00edch se otok\u016f. Ty jsou n\u011bkdy kv\u016fli vz\u00e1cnosti nemoci a n\u00edzk\u00e9 informovanosti myln\u011b zam\u011b\u0148ov\u00e1ny za alergii, co\u017e m\u016f\u017ee pacienty ohrozit i na \u017eivot\u011b.1<\/sup> Na 16. 5. p\u0159ipad\u00e1 Mezin\u00e1rodn\u00ed den heredit\u00e1rn\u00edho angioed\u00e9mu (HAE), kter\u00fd m\u00e1 v\u00e9st ke zv\u00fd\u0161en\u00ed pov\u011bdom\u00ed ve\u0159ejnosti i zdravotnick\u00e9 komunity o tomto onemocn\u011bn\u00ed.2<\/sup> Dle statistik toti\u017e lid\u00e9 s touto nemoc\u00ed \u010dekaj\u00ed v pr\u016fm\u011bru i 13 let na stanoven\u00ed diagn\u00f3zy a nasazen\u00ed odpov\u00eddaj\u00edc\u00ed l\u00e9\u010dby.3<\/sup> P\u0159ipom\u00ednat si ho v r\u00e1mci Dne HAE budou lid\u00e9 v \u0159ad\u011b zem\u00ed, a to u\u017e podev\u00e1t\u00e9. V roz\u0161\u00ed\u0159en\u00ed pov\u011bdom\u00ed, ale i podpo\u0159e zejm\u00e9na mlad\u00fdch pacient\u016f v jejich spokojen\u00e9m \u017eivot\u011b bude nav\u00edc nov\u011b pom\u00e1hat tak\u00e9 pacientsk\u00e1 organizace HAE Junior.4<\/sup> Spolu s faktem, \u017ee ke kvalit\u011b \u017eivota p\u0159isp\u00edvaj\u00ed i nar\u016fstaj\u00edc\u00ed l\u00e9\u010debn\u00e9 mo\u017enosti, mezi nimi\u017e nyn\u00ed figuruj\u00ed nov\u00e9 mo\u017enosti preventivn\u00ed l\u00e9\u010dby, se zdaj\u00ed b\u00fdt vyhl\u00eddky pacient\u016f slibn\u00e9. <\/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-8935","pressroom","type-pressroom","status-publish","has-post-thumbnail","hentry","pressroom_tag-zdravi"],"yoast_head":"\nHeredit\u00e1rn\u00ed angioed\u00e9m \u2013 z\u00e1va\u017en\u00e1 nemoc, pro kterou je v \u010cR l\u00e9\u010dba i pom\u00e1haj\u00edc\u00ed pacientsk\u00e1 organizace - 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-zavazna-nemoc-pro-kterou-je-v-cr-lecba-i-pomahajici-pacientska-organizace\/\" \/>\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 z\u00e1va\u017en\u00e1 nemoc, pro kterou je v \u010cR l\u00e9\u010dba i pom\u00e1haj\u00edc\u00ed pacientsk\u00e1 organizace - Havas Prague\" \/>\n<meta property=\"og:description\" content=\"Heredit\u00e1rn\u00ed angioed\u00e9m je genetickou poruchou imunitn\u00edho syst\u00e9mu s projevy bolestiv\u00fdch, nesv\u011bdiv\u00fdch a opakuj\u00edc\u00edch se otok\u016f. 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