{"id":44233,"date":"2021-04-16T09:01:56","date_gmt":"2021-04-16T07:01:56","guid":{"rendered":"https:\/\/pmza.sk\/?p=44233"},"modified":"2021-04-16T09:01:56","modified_gmt":"2021-04-16T07:01:56","slug":"budatinsky-hrad-svietil-na-cerveno","status":"publish","type":"post","link":"https:\/\/pmza.sk\/?p=44233","title":{"rendered":"Budat\u00ednsky hrad svietil na \u010derveno"},"content":{"rendered":"

Pova\u017esk\u00e9 m\u00fazeum v \u017diline sa v sobotu 17. apr\u00edla po prv\u00fdkr\u00e1t zapoj\u00ed do iniciat\u00edvy „Rozsvie\u0165me \u010derven\u00e9 svetl\u00e1“ v r\u00e1mci Svetov\u00e9ho d\u0148a hemof\u00edlie ako znak podpory pacientov s nevylie\u010dite\u013en\u00fdm vroden\u00fdm krv\u00e1cav\u00fdm ochoren\u00edm.\u00a0 Na \u010derveno bude v tento de\u0148 \u017eiari\u0165 Budat\u00ednsky hrad.<\/p>\n

Tla\u010dov\u00e1 spr\u00e1va Slovensk\u00e9ho hemofilick\u00e9ho zdru\u017eenia<\/strong><\/p>\n

Hemof\u00edlia je nevylie\u010dite\u013en\u00e9 ochorenie, ktor\u00e9 sa prejavuje poruchou zr\u00e1\u017eanlivosti krvi. \u0160tatisticky sa t\u00fdka jedn\u00e9ho z\u00a05000 chlapcov. Na Slovensku \u017eije s\u00a0t\u00fdmto ochoren\u00edm viac ako 600 pacientov a a\u017e tretina z nich s\u00fa deti. V\u010faka modernej vede a\u00a0pokroku v medic\u00edne m\u00f4\u017eu dnes pacienti s hemof\u00edliou \u017ei\u0165 kvalitn\u00fd a\u00a0plnohodnotn\u00fd \u017eivot a\u00a0maj\u00fa \u010doraz lep\u0161iu perspekt\u00edvu do bud\u00facnosti. Aj to je odkaz Svetov\u00e9ho d\u0148a hemof\u00edlie, ktor\u00e9mu v\u00a0kalend\u00e1ri ka\u017edoro\u010dne patr\u00ed 17. apr\u00edl. Hoci ide o\u00a0zriedkav\u00e9 ochorenie, pr\u00e1ve tento de\u0148 je pr\u00edle\u017eitos\u0165ou pouk\u00e1za\u0165 na \u017eivot pacientov s\u00a0hemof\u00edliou a\u00a0in\u00fdmi vroden\u00fdmi krv\u00e1cav\u00fdmi poruchami a takto im vyjadri\u0165 podporu a spolupatri\u010dnos\u0165. T\u00fa m\u00f4\u017ee verejnos\u0165 prejavi\u0165 aj symbolick\u00fdm rozsvieten\u00edm \u010derven\u00fdch svetiel v\u00a0okn\u00e1ch ich domov a\u00a0bytov. Slovensk\u00e9 hemofilick\u00e9 zdru\u017eenie, ktor\u00e9 na Slovensku zastupuje \u013eud\u00ed s\u00a0vroden\u00fdmi krv\u00e1cav\u00fdmi poruchami, v\u00a0tento de\u0148 taktie\u017e nasvieti viacer\u00e9 v\u00fdznamn\u00e9 budovy a\u00a0monumenty v\u00a0r\u00f4znych regi\u00f3noch Slovenska na\u010derveno.<\/p>\n

\"\"<\/a><\/p>\n

Hemof\u00edlia je vroden\u00e1 krv\u00e1cav\u00e1 porucha. Ide o genetick\u00fa poruchu, ktor\u00e1 sp\u00f4sobuje nedostato\u010dn\u00fa tvorbu d\u00f4le\u017eitej bielkoviny krvnej plazmy tzv. koagula\u010dn\u00fd faktor, a\u00a0t\u00fdm aj nedostato\u010dn\u00fa zr\u00e1\u017eanlivos\u0165 krvi, \u010do vedie k neschopnosti zastavi\u0165 krv\u00e1canie po poranen\u00ed. V preva\u017enej v\u00e4\u010d\u0161ine pr\u00edpadov sa vyskytuje u mu\u017eov, preto\u017ee g\u00e9n pre tento koagula\u010dn\u00fd faktor je ulo\u017een\u00fd na pohlavnom chromoz\u00f3me X. Ke\u010f\u017ee mu\u017ei maj\u00fa len jeden chromoz\u00f3m X, ak\u00e1ko\u013evek odch\u00fdlka v g\u00e9noch ulo\u017een\u00fdch na tomto chromoz\u00f3me, sa bude klinicky prejavova\u0165. Nedostato\u010dn\u00e1 zr\u00e1\u017eanlivos\u0165 krvi m\u00f4\u017ee vies\u0165 najm\u00e4 v \u0165a\u017e\u0161\u00edch pr\u00edpadoch hemof\u00edlie aj k nekontrolovate\u013en\u00e9mu vn\u00fatorn\u00e9mu krv\u00e1caniu. To m\u00f4\u017ee nasta\u0165 u\u017e aj pri \u013eahkom \u00faraze a\u00a0niekedy k\u00a0nemu doch\u00e1dza aj spont\u00e1nne, bez zjavnej pr\u00ed\u010diny.<\/p>\n

D\u00f4le\u017eit\u00e1 je diagnostika a kvalitn\u00e1\u00a0lie\u010dba<\/strong><\/p>\n

T\u00fdmto z\u00e1va\u017en\u00fdm nevylie\u010dite\u013en\u00fdm ochoren\u00edm trp\u00ed 1 z\u00a010 000 \u013eud\u00ed vo svete a\u00a0mnoho z\u00a0nich zomiera pre nedostato\u010dn\u00fa lie\u010dbu u\u017e v\u00a0\u00fatlom veku. Najm\u00e4 v\u00a0rozvojov\u00fdch krajin\u00e1ch s\u00fa mnoh\u00ed nediagnostikovan\u00ed. Svetov\u00e1 hemofilick\u00e1 feder\u00e1cia (WFH) pom\u00e1ha humanit\u00e1rnou \u010dinnos\u0165ou zabezpe\u010di\u0165 aspo\u0148 z\u00e1kladn\u00fa lie\u010dbu v\u00a0najmenej rozvinut\u00fdch krajin\u00e1ch. Na Slovensku t\u00fato humanit\u00e1rnu \u010dinnos\u0165 zabezpe\u010duje Slovensk\u00e9 hemofilick\u00e9 zdru\u017eenie. Hemof\u00edlia najm\u00e4 v minulosti v\u00fdznamne ovplyv\u0148ovala kvalitu \u017eivota pacientov. Opakovan\u00e9, \u010dast\u00e9 krv\u00e1canie predov\u0161etk\u00fdm do k\u013abov prin\u00e1\u0161a riziko bolestiv\u00fdch, chronick\u00fdch opuchov, a\u00a0m\u00f4\u017ee vies\u0165 a\u017e k trval\u00e9mu po\u0161kodeniu k\u013abov a\u00a0invalidite pacientov. Lie\u010dba hemof\u00edlie spo\u010d\u00edva v nahraden\u00ed ch\u00fdbaj\u00faceho koagula\u010dn\u00e9ho faktora v krvi. Tento proces sa uskuto\u010d\u0148uje aplik\u00e1ciou koncentr\u00e1tu koagula\u010dn\u00e9ho faktora, ktor\u00fd je pod\u00e1van\u00fd intraven\u00f3zne priamo do \u017eily pacienta. Koncentr\u00e1t koagula\u010dn\u00e9ho faktora je potrebn\u00e9 poda\u0165 \u010do najsk\u00f4r od za\u010diatku krv\u00e1cania, aby sa predi\u0161lo dlhodob\u00e9mu po\u0161kodeniu organizmu a\u00a0pri krv\u00e1can\u00ed do \u017eivotne d\u00f4le\u017eit\u00fdch org\u00e1nov aj mo\u017enej strate \u017eivota. V\u00a0s\u00fa\u010dasnosti okrem aplik\u00e1cie koncentr\u00e1tov koagula\u010dn\u00fdch faktorov u\u00a0niektor\u00fdch pacientov existuj\u00fa aj \u010fal\u0161ie mo\u017enosti tzv. novej nefaktorovej (nesubstitu\u010dnej) terapie.\u00a0<\/p>\n

\"\"<\/a><\/p>\n

Svetov\u00fd de\u0148 hemof\u00edlie<\/strong><\/p>\n

U\u017e od roku 1989 sa po celom svete sp\u00e1ja 17. apr\u00edl so Svetov\u00fdm d\u0148om hemof\u00edlie. Ten d\u00e1va pravidelne pr\u00edle\u017eitos\u0165 cez verejn\u00fa osvetu hovori\u0165 o\u00a0tom, ako vyzer\u00e1 \u017eivot pacienta s\u00a0vroden\u00fdm krv\u00e1cav\u00fdm ochoren\u00edm a postavi\u0165 sa za pacientov s\u00a0t\u00fdmito zriedkav\u00fdmi ochoreniami. Tento de\u0148 si ka\u017edoro\u010dne pripom\u00edna viac ako 134 kraj\u00edn sveta. Pr\u00e1ve my\u0161lienka podpory celosvetovej komunity pacientov s\u00a0vroden\u00fdmi krv\u00e1cav\u00fdmi poruchami a zdie\u013eania vz\u00e1jomn\u00fdch sk\u00fasenost\u00ed v\u00a0prospech pacientov sa st\u00e1va hlavn\u00fdm mottom aktu\u00e1lneho Svetov\u00e9ho d\u0148a hemof\u00edlie 2021.<\/p>\n

Symbolom 17. apr\u00edla po celom svete a\u00a0v\u00fdzvou na zapojenie pre verejnos\u0165 je aj rozsvecovanie\u00a0 \u010derven\u00fdch svetiel v\u00a0dom\u00e1cnostiach a tie\u017e vysvecovanie v\u00fdznamn\u00fdch budov a monumentov na\u010derveno. K my\u0161lienke \u201eRozsvie\u0165me \u010derven\u00e9 svetl\u00e1“ sa dlhodobo prid\u00e1va aj Slovensk\u00e9 hemofilick\u00e9 zdru\u017eenie. Na z\u00e1klade iniciat\u00edvy zdru\u017eenia sa tento rok do farby krvi \u201ezaodej\u00fa\u201c :<\/p>\n

    \n
  1. Prezidentsk\u00fd pal\u00e1c – Grasalkovi\u010dov pal\u00e1c v Bratislave<\/li>\n
  2. D\u00f3m sv\u00e4tej Al\u017ebety v\u00a0Ko\u0161iciach<\/li>\n
  3. V\u00fdchodoslovensk\u00e9 m\u00fazeum – historick\u00e1 \u00fa\u010delov\u00e1 budova v\u00a0Ko\u0161iciach<\/li>\n
  4. Bazilika sv\u00e4t\u00e9ho Eg\u00eddia Bardejov<\/li>\n
  5. Mestsk\u00e1 radnica v Bardejove<\/li>\n
  6. Budat\u00ednsky hrad<\/li>\n
  7. Bojnick\u00fd z\u00e1mok<\/li>\n
  8. Nov\u00e1 budova Slovensk\u00e9ho n\u00e1rodn\u00e9ho divadla v\u00a0Bratislave<\/li>\n
  9. Most SNP v\u00a0Bratislave<\/li>\n
  10. Fas\u00e1da n\u00e1kupn\u00e9ho centra Eurovea v Bratislave na strane N\u00e1mestia M.R.\u0160tef\u00e1nika<\/li>\n
  11. N\u00e1kupn\u00e9 centrum Bory Mall v Bratislave<\/li>\n
  12. M\u00fazeum Slovensk\u00e9ho n\u00e1rodn\u00e9ho povstania v Banskej Bystrici<\/li>\n
  13. \u0160t\u00e1tna opera v Banskej Bystrici<\/li>\n
  14. Ve\u017ea mestsk\u00e9ho hradu Barbakan v Banskej Bystrici\u00a0<\/li>\n
  15. Interi\u00e9r arkieru komnaty M\u00e1rie S\u00e9\u010di na hrade \u013dup\u010da v Slovenskej \u013dup\u010di<\/li>\n
  16. Europa Business Center v Banskej Bystrici<\/li>\n
  17. Divadeln\u00e9 n\u00e1mestie v Martine<\/li>\n
  18. Slovensk\u00e9 komorn\u00e9 divadlo v Martine<\/li>\n
  19. Radnica v Spi\u0161skej Novej Vsi<\/li>\n
  20. Divadlo Andreja Bagara v\u00a0Nitre<\/li>\n
  21. Chrenovsk\u00fd most v\u00a0Nitre<\/li>\n
  22. Estak\u00e1da dia\u013enice D1 v Pova\u017eskej Bystrici<\/li>\n
  23. Kino Mier v Nov\u00fdch Z\u00e1mkoch<\/li>\n
  24. Mestsk\u00fd \u00farad Nov\u00e9 Z\u00e1mky<\/li>\n
  25. Fas\u00e1da re\u0161taur\u00e1cie Pas\u00e1\u017e v Martine<\/li>\n
  26. Vons Gym fitnescentrum v Martine<\/li>\n
  27. Kom\u00edn v b\u00fdvalom are\u00e1li Tatra n\u00e1bytku v\u00a0Martine<\/li>\n<\/ol>\n

    MUDr. Tom\u00e1\u0161 \u0160imurda, PhD.<\/p>\n

    N\u00e1rodn\u00e9 centrum hemost\u00e1zy a\u00a0tromb\u00f3zy<\/p>\n

    Klinika hematol\u00f3gie a transfuziol\u00f3gie UNM a JLF UK<\/p>\n

    \u010dlen Slovensk\u00e9ho hemofilick\u00e9ho zdru\u017eenia<\/p>\n

    \"\"<\/a><\/p>\n

    \"\"<\/a><\/p>\n

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

    Pova\u017esk\u00e9 m\u00fazeum v \u017diline sa v sobotu 17. apr\u00edla po prv\u00fdkr\u00e1t zapoj\u00ed do iniciat\u00edvy „Rozsvie\u0165me \u010derven\u00e9 svetl\u00e1“ v r\u00e1mci Svetov\u00e9ho d\u0148a hemof\u00edlie ako znak podpory pacientov s nevylie\u010dite\u013en\u00fdm vroden\u00fdm krv\u00e1cav\u00fdm ochoren\u00edm.\u00a0 Na \u010derveno bude v tento de\u0148 \u017eiari\u0165 Budat\u00ednsky hrad. Tla\u010dov\u00e1 spr\u00e1va Slovensk\u00e9ho hemofilick\u00e9ho zdru\u017eenia Hemof\u00edlia je nevylie\u010dite\u013en\u00e9 ochorenie, ktor\u00e9 sa prejavuje poruchou zr\u00e1\u017eanlivosti krvi. […]<\/p>\n","protected":false},"author":2,"featured_media":44244,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[31],"tags":[],"class_list":["post-44233","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aktuality"],"yoast_head":"\nBudat\u00ednsky hrad svietil na \u010derveno - Pova\u017esk\u00e9 m\u00fazeum<\/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:\/\/pmza.sk\/?p=44233\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Budat\u00ednsky hrad svietil na \u010derveno - Pova\u017esk\u00e9 m\u00fazeum\" \/>\n<meta property=\"og:description\" content=\"Pova\u017esk\u00e9 m\u00fazeum v \u017diline sa v sobotu 17. apr\u00edla po prv\u00fdkr\u00e1t zapoj\u00ed do iniciat\u00edvy „Rozsvie\u0165me \u010derven\u00e9 svetl\u00e1“ v r\u00e1mci Svetov\u00e9ho d\u0148a hemof\u00edlie ako znak podpory pacientov s nevylie\u010dite\u013en\u00fdm vroden\u00fdm krv\u00e1cav\u00fdm ochoren\u00edm.\u00a0 Na \u010derveno bude v tento de\u0148 \u017eiari\u0165 Budat\u00ednsky hrad. Tla\u010dov\u00e1 spr\u00e1va Slovensk\u00e9ho hemofilick\u00e9ho zdru\u017eenia Hemof\u00edlia je nevylie\u010dite\u013en\u00e9 ochorenie, ktor\u00e9 sa prejavuje poruchou zr\u00e1\u017eanlivosti krvi. 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