{"id":3386,"date":"2026-03-19T11:24:02","date_gmt":"2026-03-19T11:24:02","guid":{"rendered":"https:\/\/kristianhulala.sk\/kako-se-zivi-s-epidermolysis-bullosa\/"},"modified":"2026-03-28T15:08:08","modified_gmt":"2026-03-28T15:08:08","slug":"kako-se-zivi-s-epidermolysis-bullosa","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/hr\/kako-se-zivi-s-epidermolysis-bullosa\/","title":{"rendered":"Kako se \u017eivi s 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;\">Epidermolysis Bullosa \u2013 moja pri\u010da i \u017eivot s bole\u0161\u0107u leptirovih krila<\/h1><\/div><div class=\"fusion-text fusion-text-1\"><p>Epidermolysis Bullosa je rijetka genetska bolest poznata i kao bolest leptirovih krila. U ovom \u010dlanku opisujem svoju osobnu pri\u010du i svakodnevni \u017eivot s ovom bole\u0161\u0107u. <\/p>\n<h3 >S \u010dime se svakodnevno susre\u0107em<\/h3>\n<ul>\n<li>bolne rane na ko\u017ei i unutar tijela<\/li>\n<li>problemi s gutanjem hrane<\/li>\n<li>svakodnevno previjanje rana<\/li>\n<li>infuzije \u017eeljeza<\/li>\n<li>kroni\u010dna anemija (gubitak krvi iz rana)<\/li>\n<li>vrlo suhe o\u010di<\/li>\n<li>ograni\u010deno kretanje<\/li>\n<\/ul>\n<h3 >Zdravstveni problemi povezani s bole\u0161\u0107u<\/h3>\n<p>S ovom bole\u0161\u0107u povezani su mnogi drugi zdravstveni problemi. Rane nemam samo izvana, nego i iznutra.<\/p>\n<p>Prehrana mi mora biti posebna, mama mi mora sve miksati jer imam problema s gutanjem. Ne mogu progutati tvrde i velike komade hrane. Kad mi ne\u0161to zapne, kroz grlo mi ne prolazi ni voda i \u010desto se moram po\u0161teno namu\u010diti da to rije\u0161im.  <\/p>\n<p><img decoding=\"async\" class=\"alignright wp-image-95\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-300x222.jpg\" alt=\"Kristi\u00e1n Hulala kao malo dijete s bole\u0161\u0107u Epidermolysis Bullosa\" width=\"358\" height=\"265\" srcset=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-200x148.jpg 200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-300x222.jpg 300w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-400x296.jpg 400w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-600x445.jpg 600w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-768x569.jpg 768w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-800x593.jpg 800w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-1024x759.jpg 1024w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000-1200x889.jpg 1200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041343271000.jpg 1395w\" sizes=\"(max-width: 358px) 100vw, 358px\" \/><\/p>\n<p>Takvo zapinjanje hrane vrlo je bolno i mo\u017ee dodatno pogor\u0161ati probleme s gutanjem.<\/p>\n<p>Prehrana mi je vrlo ograni\u010dena jer se ne mo\u017ee sve pripremiti i izmiksati tako da to mogu pojesti. Na primjer, pohano meso, tvrdi sirevi ili kobasica. Ono \u0161to se ne mo\u017ee izmiksati, ne mogu ni pojesti \u2013 takva jela mogu samo pomirisati.  <\/p>\n<p>Redovito idem na kontrole osteoporoze jer mi zbog bolesti kosti postaju krhke. Zubi su mi ispali ve\u0107 u dobi od 10 do 12 godina. <\/p>\n<p>Idem i na kontrole krvi jer s ranama gubim krv, a time i hemoglobin. Moram i\u0107i na infuzije, pri \u010demu za injekcije \u010desto moram dopla\u0107ivati. <\/p>\n<p>Redovito idem i kod oftalmologa jer imam o\u0161te\u0107ene o\u010di koje su vrlo suhe. Za antibiotske kapi moram dopla\u0107ivati, a ostale kupujem jer nisu na recept. Bez kapi bih imao upaljene o\u010di, ne bih ih mogao otvoriti po 3\u20134 dana i to bi bila velika bol.  <\/p>\n<h3 >Svakodnevna njega i pomo\u0107 roditelja<\/h3>\n<p>Mama je sa mnom kod ku\u0107e od mog ro\u0111enja jer zahtijevam 24-satnu njegu. Svaki dan ujutro i nave\u010der radimo veliko previjanje cijelog tijela, a tijekom dana prema potrebi. <\/p>\n<p><img decoding=\"async\" class=\"alignleft wp-image-93\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-300x247.jpg\" alt=\"Djetinjstvo i \u017eivot s Epidermolysis Bullosa u dvori\u0161tu\" width=\"369\" height=\"304\" srcset=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-200x165.jpg 200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-300x247.jpg 300w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-400x329.jpg 400w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-600x494.jpg 600w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-768x632.jpg 768w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-800x659.jpg 800w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-1024x843.jpg 1024w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-1200x988.jpg 1200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-1536x1265.jpg 1536w\" sizes=\"(max-width: 369px) 100vw, 369px\" \/><\/p>\n<p>Jedno jutarnje previjanje nikada ne izdr\u017ei do ve\u010deri. Uvijek treba ne\u0161to namazati, previti ili promijeniti flaster. <\/p>\n<p>Ne mogu obavljati ni uobi\u010dajene stvari \u2013 ne mogu si uzeti hranu, otvoriti bocu vode i ne mogu nositi ni 2 kg. Te\u017eak sam samo 43 kg pri visini od 180 cm. <\/p>\n<p>Mama je moja desna ruka \u2013 priprema mi hranu, poma\u017ee mi oko higijene i brine se o meni u svemu. Neizmjerno sam joj zahvalan na tome. Da nemam roditelje koji me vole, danas vi\u0161e ne bih bio ovdje.  <\/p>\n<p>Otac me vozi na kontrole jer ne smijem i\u0107i kolima hitne pomo\u0107i zbog rizika od infekcije. Umjesto toga, moramo pla\u0107ati gorivo. <\/p>\n<p>Imam oslabljenu muskulaturu \u2013 pro\u0161etam maksimalno 15 metara i odmah sam umoran, zadihan i moram sjesti.<\/p>\n<h3 >\u017divot kod ku\u0107e i moji hobiji<\/h3>\n<p>Od 18. godine sam u invalidskoj mirovini jer ne mogu raditi.<\/p>\n<p><img decoding=\"async\" class=\"alignright wp-image-94\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-300x212.jpg\" alt=\"\u017divot kod ku\u0107e s Epidermolysis Bullosa uz ra\u010dunalo\" width=\"417\" height=\"295\" srcset=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-200x141.jpg 200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-300x212.jpg 300w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-400x283.jpg 400w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-600x424.jpg 600w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-768x543.jpg 768w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-800x566.jpg 800w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-1024x724.jpg 1024w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-1200x849.jpg 1200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-1536x1087.jpg 1536w\" sizes=\"(max-width: 417px) 100vw, 417px\" \/><\/p>\n<p>Ve\u0107inu vremena provodim uz ra\u010dunalo. Zanimaju me tehnologija, videozapisi, \u010dlanci i razne zanimljivosti iz svijeta znanosti i svemira. Volim gledati YouTube i povremeno zaigram igre.  <\/p>\n<p>Puno vremena provodim i sa svojim psima te idem s mamom u kratke \u0161etnje.<\/p>\n<h3 >Ozdravstveni boravci na moru<\/h3>\n<p>Kad uspijemo u\u0161tedjeti, idemo na lje\u010dili\u0161ne boravke na more u Hrvatsku.<\/p>\n<p><img decoding=\"async\" class=\"alignleft wp-image-92\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-300x187.jpg\" alt=\"Lje\u010dili\u0161ni boravak u Hrvatskoj uz more\" width=\"404\" height=\"252\" srcset=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-200x125.jpg 200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-300x187.jpg 300w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-400x249.jpg 400w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-600x374.jpg 600w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-768x478.jpg 768w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-800x498.jpg 800w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-1024x638.jpg 1024w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-1200x747.jpg 1200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n-1536x957.jpg 1536w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/67662563_427914384474992_309419099090321408_n.jpg 1654w\" sizes=\"(max-width: 404px) 100vw, 404px\" \/><\/p>\n<p>U more ne smijem i\u0107i jer bi mi sol pogor\u0161ala rane. Me\u0111utim, poma\u017ee mi jodni zrak koji poti\u010de zacjeljivanje i disanje. <\/p>\n<p>Promjena okoline mi jako poma\u017ee. U Hrvatskoj se osje\u0107am bolje nego kod ku\u0107e, \u0161to mi je vrlo neobi\u010dno, ali ujedno i ohrabruju\u0107e. <\/p>\n<h3 >Moji psi\u0107i<\/h3>\n<p>Imam dva psa pasmine Yorkie koji su mi kao obitelj. Vesele me i poma\u017eu mi da ne mislim stalno na bol. <\/p>\n<h3 >Godi\u0161nja doba i Bo\u017ei\u0107<\/h3>\n<p><img decoding=\"async\" class=\"alignleft wp-image-172 size-medium\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-300x225.jpg\" alt=\"Bo\u017ei\u0107 i \u017eivot s Epidermolysis Bullosa\" width=\"300\" height=\"225\" srcset=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-200x150.jpg 200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-300x225.jpg 300w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-400x300.jpg 400w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-600x450.jpg 600w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-768x576.jpg 768w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-800x600.jpg 800w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-1024x768.jpg 1024w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20-1200x900.jpg 1200w, https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/choroba-motylich-kridiel-EB-Epidermolysis-Bullosa-20.jpg 1296w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p>Ljeti volim \u0161to mogu biti u dvori\u0161tu i odmarati se. Zimi obo\u017eavam Bo\u017ei\u0107 \u2013 njegovu atmosferu, ukrase i mir. <\/p>\n<p>Bo\u017ei\u0107ne filmove gledam ve\u0107 od listopada i ne mogu zamisliti prosinac bez njih \ud83d\ude42<\/p>\n<h3 >Hvala na pomo\u0107i<\/h3>\n<p>Zahvaljuju\u0107i Vama sam 2019. godine mogao kupiti elektri\u010dna invalidska kolica <a href=\"https:\/\/kristianhulala.sk\/hr\/moja-elektricna-invalidska-kolica-airwheel-h3s\/\" target=\"_blank\" rel=\"noopener\">AirWheel H3s<\/a> i sna\u017eno <a href=\"https:\/\/kristianhulala.sk\/hr\/moje-novo-gaming-racunalo-lian-li-lancool-216-od-tichepc-sk\/\" target=\"_blank\" rel=\"noopener\">gaming ra\u010dunalo<\/a>.<\/p>\n<p>Drago mi je \u0161to sam zahvaljuju\u0107i roditeljima dogurao do ovdje i danas imam 39 godina. Unato\u010d svim problemima, trudim se \u017eivjeti najbolje \u0161to mogu. <\/p>\n<p><strong>Sve financijske donacije koristim isklju\u010divo za lijekove, vitamine i medicinska pomagala.<\/strong><\/p>\n<p><strong>Svima koji mi odlu\u010de pomo\u0107i, od srca zahvaljujem.<\/strong><\/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-3386","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 moja pri\u010da (bolest leptirovih krila)<\/title>\n<meta name=\"description\" content=\"Pro\u010ditajte moju osobnu pri\u010du o \u017eivotu s Epidermolysis Bullosa. 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