{"id":3215,"date":"2026-03-19T11:15:58","date_gmt":"2026-03-19T11:15:58","guid":{"rendered":"https:\/\/kristianhulala.sk\/osobe-s-bolescu-epidermolysis-bullosa\/"},"modified":"2026-03-28T15:08:50","modified_gmt":"2026-03-28T15:08:50","slug":"osobe-s-bolescu-epidermolysis-bullosa","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/hr\/osobe-s-bolescu-epidermolysis-bullosa\/","title":{"rendered":"Osobe s bole\u0161\u0107u Epidermolysis Bullosa"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1331.2px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-title title fusion-title-1 fusion-sep-none fusion-title-text fusion-title-size-one\"><h1 class=\"fusion-title-heading title-heading-left\" style=\"margin:0;\">\u017divot s Epidermolysis Bullosa \u2013 kako \u017eive osobe s bole\u0161\u0107u leptirovih krila<\/h1><\/div><div class=\"fusion-text fusion-text-1\"><h3 >\u017divot s Epidermolysis Bullosa (bolest leptirovih krila)<\/h3>\n<p>\u017divot s bole\u0161\u0107u Epidermolysis Bullosa zahtjevan je i donosi brojna svakodnevna ograni\u010denja. Rije\u010d je o rijetkoj genetskoj bolesti ko\u017ee, pri kojoj je ko\u017ea vrlo krhka i osjetljiva. <\/p>\n<p>\u010cak i mala ozljeda mo\u017ee uzrokovati bolnu ranu ili mjehur. Dovoljan je blag pritisak ili trenje i ko\u017ea se o\u0161teti. <\/p>\n<p>Unato\u010d tome, osobe s ovom bole\u0161\u0107u nastoje voditi \u0161to normalniji \u017eivot. Poha\u0111aju \u0161kolu, dru\u017ee se s prijateljima, bave se svojim hobijima, a mnogi uspiju zasnovati i obitelj. <\/p>\n<h3 >Oprez zbog ozljeda<\/h3>\n<p>Osoba s bole\u0161\u0107u leptirovih krila mora paziti prakti\u010dki na sve. \u010cak i mala ogrebotina ili trenje mo\u017ee uzrokovati bolnu ranu. <\/p>\n<p>Pacijenti moraju paziti, primjerice, na:<\/p>\n<ul>\n<li>odgovaraju\u0107u obu\u0107u<\/li>\n<li>pa\u017eljivo odijevanje<\/li>\n<li>meke povr\u0161ine pri sjedenju ili le\u017eanju<\/li>\n<\/ul>\n<p>\u010cak i uobi\u010dajene aktivnosti, poput brisanja ru\u010dnikom ili dodira s tvr\u0111im predmetom, mogu uzrokovati ozljedu.<\/p>\n<p>Kod male djece ozljeda mo\u017ee nastati ve\u0107 pri puzanju ili igri s igra\u010dkama.<\/p>\n<h3 >Zavoji i meke povr\u0161ine<\/h3>\n<p>Pri le\u017eanju i sjedenju osoba s EB-om trebala bi koristiti ponajprije meke povr\u0161ine. Pacijenti \u010desto koriste antidekubitalne madrace i podloge. <\/p>\n<p>Mnoge dijelove tijela pacijenti preventivno previjaju kako bi smanjili rizik od ozljede ko\u017ee.<\/p>\n<h3 >Redovita njega<\/h3>\n<p>Njega ko\u017ee svakodnevni je dio \u017eivota s EB-om. Zbrinjavanje rana i previjanje mogu trajati i nekoliko sati dnevno. <\/p>\n<p>Njega je za djecu i roditelje fizi\u010dki i psihi\u010dki zahtjevna.<\/p>\n<h3 >Prehrana<\/h3>\n<p>Kod nekih pacijenata mjehuri se stvaraju i u ustima ili u jednjaku. To uzrokuje bol pri jelu i gutanju. <\/p>\n<p>Stoga mnogi pacijenti konzumiraju ponajprije:<\/p>\n<ul>\n<li>pasiranu prehranu<\/li>\n<li>ka\u0161astu hranu<\/li>\n<li>meku hranu<\/li>\n<\/ul>\n<p>Me\u0111utim, takav na\u010din prehrane mo\u017ee dovesti do nedostatka hranjivih tvari, pothranjenosti ili anemije.<\/p>\n<h3 >Potreba za pomo\u0107i<\/h3>\n<p>Osobe s EB-om \u010desto trebaju pomo\u0107 u svakodnevnim aktivnostima. Skrb mo\u017ee biti zahtjevna ne samo fizi\u010dki, nego i financijski, jer zahtijeva posebna medicinska pomagala i materijale. <\/p>\n<h3 >Ograni\u010dena pokretljivost<\/h3>\n<p>Kod nekih oblika EB kretanje je znatno ograni\u010deno samom bole\u0161\u0107u.<\/p>\n<p>Sra\u0161tanje prstiju ili o\u0161te\u0107enje mi\u0161i\u0107a mogu ote\u017eati kori\u0161tenje ruku ili hodanje.<\/p>\n<p>U nekim slu\u010dajevima pacijenti stoga moraju koristiti invalidska kolica.<\/p>\n<h3 >Nerazumijevanje u dru\u0161tvu<\/h3>\n<p>Budu\u0107i da je rije\u010d o vrlo rijetkoj bolesti, mnogi ljudi za nju nikada nisu \u010duli. Ponekad se zato javljaju pogre\u0161ne predod\u017ebe, primjerice da je rije\u010d o zaraznoj bolesti. <\/p>\n<p>No to nije istina. Epidermolysis Bullosa nije zarazna bolest. <\/p>\n<p>Neki se pacijenti stoga susre\u0107u s nerazumijevanjem ili ograni\u010denjima, primjerice pri posjetu bazenima ili sportskim aktivnostima.<\/p>\n<h3 >Zaklju\u010dak<\/h3>\n<p>\u017divot s Epidermolysis Bullosa zahtjevan je, no unato\u010d tome osobe s ovom bole\u0161\u0107u nastoje \u017eivjeti ispunjen \u017eivot. Va\u017ena je ne samo pravilna njega, nego i razumijevanje te podr\u0161ka okoline.<\/p>\n<\/div><div class=\"fusion-text fusion-text-2\"><p>Vi\u0161e o bolesti mo\u017eete prona\u0107i i u \u010dlanku <a href=\"https:\/\/kristianhulala.sk\/hr\/epidermolysis-bullosa-kozna-bolest-leptirovih-krila\/\" target=\"_blank\" rel=\"noopener\">Epidermolysis Bullosa \u2013 bolest leptirovih krila<\/a>.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-3215","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v22.1 (Yoast SEO v28.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>\u017divot s Epidermolysis Bullosa \u2013 kako izgleda svakodnevni \u017eivot<\/title>\n<meta name=\"description\" content=\"\u017divot s bole\u0161\u0107u Epidermolysis Bullosa donosi mnoge izazove. 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