{"id":3406,"date":"2026-03-19T11:24:27","date_gmt":"2026-03-19T11:24:27","guid":{"rendered":"https:\/\/kristianhulala.sk\/egy-eb-s-iskolas-elete\/"},"modified":"2026-03-28T15:07:09","modified_gmt":"2026-03-28T15:07:09","slug":"egy-eb-s-iskolas-elete","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/","title":{"rendered":"Egy EB-s iskol\u00e1s \u00e9lete"},"content":{"rendered":"

Egy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete<\/p>\n

\n
<\/div>\n<\/div><\/h1><\/div>

Egy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete<\/h3>\n

Ez a cikk az Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g)<\/strong> nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1sk\u00e9nt elt\u00f6lt\u00f6tt \u00e9letemr\u0151l \u00e9s az iskolai tapasztalataimr\u00f3l sz\u00f3l.<\/p>\n

Nem j\u00e1rtam \u00f3vod\u00e1ba, \u00e9s csak 7 \u00e9ves koromban kezdtem el iskol\u00e1ba j\u00e1rni. Az els\u0151 oszt\u00e1lyt \u00e9desany\u00e1mmal egy\u00fctt v\u00e9geztem \u2013 mellettem \u00fclt a padban, napk\u00f6zben kezelte a sebeimet, \u00e9s vigy\u00e1zott, hogy ne essek el. Nagyon neh\u00e9z id\u0151szak volt. <\/p>\n

Minden \u00e9jjel fel\u00e9bredtem, \u00e9s csak ny\u00e1lat \u00f6klendeztem fel, mert probl\u00e9m\u00e1im vannak a torkommal \u00e9s a nyel\u00e9ssel.<\/p>\n

\"Iskol\u00e1sk\u00e9nt<\/p>\n

D\u00e9lel\u0151tt gyakran sem enni, sem inni nem tudtam. Ennek oka az iskol\u00e1val kapcsolatos idegess\u00e9g is volt. <\/p>\n

Egy\u00e9ni tanul\u00e1s otthon<\/h3>\n

A m\u00e1sodik oszt\u00e1lyt\u00f3l egy\u00e9ni tanul\u00e1sra t\u00e9rtem \u00e1t otthon.<\/p>\n

A tan\u00edt\u00f3n\u0151 hetente k\u00e9tszer j\u00e1rt hozz\u00e1nk. Szigor\u00fa volt, \u00e9s nem volt egyszer\u0171 sz\u00e1momra. <\/p>\n

Csak a harmadik oszt\u00e1lyt\u00f3l lett k\u00f6nnyebb, amikor egy m\u00e1sik tan\u00e1rn\u0151t kaptam, aki a eg\u00e9szs\u00e9gi \u00e1llapotomat is figyelembe vette. Az \u00e1ltal\u00e1nos iskol\u00e1t v\u00e9g\u00fcl \u00fagy fejeztem be, mint b\u00e1rki m\u00e1s. <\/p>\n

Az iskola mellett gyakran j\u00e1rtunk k\u00fcl\u00f6nb\u00f6z\u0151 orvosokhoz, \u00e9s kipr\u00f3b\u00e1ltunk k\u00fcl\u00f6nf\u00e9le kezel\u00e9seket, cseppeket \u00e9s egy\u00e9b k\u00e9sz\u00edtm\u00e9nyeket. N\u00e9h\u00e1ny sajnos t\u00f6bbet \u00e1rtott, mint haszn\u00e1lt. <\/p>\n

A gy\u00f3gyn\u00f6v\u00e9nygy\u00f3gy\u00e1szokt\u00f3l kapott gy\u00f3gyszerek ut\u00e1n p\u00e9ld\u00e1ul mindig egy-k\u00e9t h\u00e9tre k\u00f3rh\u00e1zba ker\u00fcltem. \u00c9desany\u00e1m mindig velem volt a k\u00f3rh\u00e1zban. <\/p>\n

Amikor bet\u00f6lt\u00f6ttem a 18. \u00e9let\u00e9vemet, teljes rokkants\u00e1gi nyugd\u00edjat \u00e1llap\u00edtottak meg sz\u00e1momra, mert a betegs\u00e9gem \u00e9s a kezeim \u00e1llapota miatt nem tudok semmilyen munk\u00e1t v\u00e9gezni.<\/p>\n<\/div>

<\/div>

A betegs\u00e9gemmel val\u00f3 \u00e9letemr\u0151l b\u0151vebben a R\u00f3lam<\/a> szekci\u00f3ban vagy a \u00c9let Epidermolysis Bullos\u00e1val<\/a> c\u00edm\u0171 cikkben olvashat.<\/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-3406","page","type-page","status-publish","hentry"],"yoast_head":"\nEgy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete \u2013 iskolai tapasztalatok<\/title>\n<meta name=\"description\" content=\"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/\" \/>\n<meta property=\"og:locale\" content=\"hu_HU\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Egy EB-s iskol\u00e1s \u00e9lete\" \/>\n<meta property=\"og:description\" content=\"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/\" \/>\n<meta property=\"og:site_name\" content=\"Kristi\u00e1n Hulala\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-28T15:07:09+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041317301000.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1998\" \/>\n\t<meta property=\"og:image:height\" content=\"1454\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Becs\u00fclt olvas\u00e1si id\u0151\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 perc\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/\",\"url\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/\",\"name\":\"Egy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete \u2013 iskolai tapasztalatok\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/201907041317301000-300x218.jpg\",\"datePublished\":\"2026-03-19T11:24:27+00:00\",\"dateModified\":\"2026-03-28T15:07:09+00:00\",\"description\":\"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/#breadcrumb\"},\"inLanguage\":\"hu\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"hu\",\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/#primaryimage\",\"url\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/201907041317301000-300x218.jpg\",\"contentUrl\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/201907041317301000-300x218.jpg\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/egy-eb-s-iskolas-elete\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Kezd\u0151lap\",\"item\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Egy EB-s iskol\u00e1s \u00e9lete\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/#website\",\"url\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/\",\"name\":\"Kristi\u00e1n Hulala\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/#\\\/schema\\\/person\\\/9524e128c8b412f9f7704a397d14dd6e\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"hu\"},{\"@type\":[\"Person\",\"Organization\"],\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/hu\\\/#\\\/schema\\\/person\\\/9524e128c8b412f9f7704a397d14dd6e\",\"name\":\"Kristi\u00e1n Hulala\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"hu\",\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/70947926_2351438061774831_8772886446324318208_o-min.jpg\",\"url\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/70947926_2351438061774831_8772886446324318208_o-min.jpg\",\"contentUrl\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/70947926_2351438061774831_8772886446324318208_o-min.jpg\",\"width\":1536,\"height\":1536,\"caption\":\"Kristi\u00e1n Hulala\"},\"logo\":{\"@id\":\"https:\\\/\\\/kristianhulala.sk\\\/wp-content\\\/uploads\\\/2021\\\/09\\\/70947926_2351438061774831_8772886446324318208_o-min.jpg\"},\"description\":\"Vol\u00e1m sa Kristi\u00e1n Hulala a od narodenia \u017eijem s ochoren\u00edm Epidermolysis Bullosa \u2013 chorobou mot\u00fdl\u00edch kr\u00eddel. Na tejto str\u00e1nke opisujem svoj osobn\u00fd pr\u00edbeh a sk\u00fasenosti so \u017eivotom s t\u00fdmto zriedkav\u00fdm ochoren\u00edm.\",\"sameAs\":[\"https:\\\/\\\/kristianhulala.sk\"],\"gender\":\"mu\u017e\"}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"Egy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete \u2013 iskolai tapasztalatok","description":"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/","og_locale":"hu_HU","og_type":"article","og_title":"Egy EB-s iskol\u00e1s \u00e9lete","og_description":"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.","og_url":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/","og_site_name":"Kristi\u00e1n Hulala","article_modified_time":"2026-03-28T15:07:09+00:00","og_image":[{"width":1998,"height":1454,"url":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041317301000.jpg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_misc":{"Becs\u00fclt olvas\u00e1si id\u0151":"2 perc"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/","url":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/","name":"Egy Epidermolysis Bullos\u00e1ban \u00e9l\u0151 iskol\u00e1s \u00e9lete \u2013 iskolai tapasztalatok","isPartOf":{"@id":"https:\/\/kristianhulala.sk\/hu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/#primaryimage"},"image":{"@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/#primaryimage"},"thumbnailUrl":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041317301000-300x218.jpg","datePublished":"2026-03-19T11:24:27+00:00","dateModified":"2026-03-28T15:07:09+00:00","description":"Milyen volt egy Epidermolysis Bullosa (pillang\u00f3sz\u00e1rny-betegs\u00e9g) nev\u0171 betegs\u00e9ggel \u00e9l\u0151 iskol\u00e1s \u00e9lete? Iskolai tapasztalatok, egy\u00e9ni tanul\u00e1s \u00e9s mindennapi kih\u00edv\u00e1sok.","breadcrumb":{"@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/#breadcrumb"},"inLanguage":"hu","potentialAction":[{"@type":"ReadAction","target":["https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/"]}]},{"@type":"ImageObject","inLanguage":"hu","@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/#primaryimage","url":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041317301000-300x218.jpg","contentUrl":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041317301000-300x218.jpg"},{"@type":"BreadcrumbList","@id":"https:\/\/kristianhulala.sk\/hu\/egy-eb-s-iskolas-elete\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Kezd\u0151lap","item":"https:\/\/kristianhulala.sk\/hu\/"},{"@type":"ListItem","position":2,"name":"Egy EB-s iskol\u00e1s \u00e9lete"}]},{"@type":"WebSite","@id":"https:\/\/kristianhulala.sk\/hu\/#website","url":"https:\/\/kristianhulala.sk\/hu\/","name":"Kristi\u00e1n Hulala","description":"","publisher":{"@id":"https:\/\/kristianhulala.sk\/hu\/#\/schema\/person\/9524e128c8b412f9f7704a397d14dd6e"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/kristianhulala.sk\/hu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"hu"},{"@type":["Person","Organization"],"@id":"https:\/\/kristianhulala.sk\/hu\/#\/schema\/person\/9524e128c8b412f9f7704a397d14dd6e","name":"Kristi\u00e1n Hulala","image":{"@type":"ImageObject","inLanguage":"hu","@id":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/70947926_2351438061774831_8772886446324318208_o-min.jpg","url":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/70947926_2351438061774831_8772886446324318208_o-min.jpg","contentUrl":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/70947926_2351438061774831_8772886446324318208_o-min.jpg","width":1536,"height":1536,"caption":"Kristi\u00e1n Hulala"},"logo":{"@id":"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/70947926_2351438061774831_8772886446324318208_o-min.jpg"},"description":"Vol\u00e1m sa Kristi\u00e1n Hulala a od narodenia \u017eijem s ochoren\u00edm Epidermolysis Bullosa \u2013 chorobou mot\u00fdl\u00edch kr\u00eddel. Na tejto str\u00e1nke opisujem svoj osobn\u00fd pr\u00edbeh a sk\u00fasenosti so \u017eivotom s t\u00fdmto zriedkav\u00fdm ochoren\u00edm.","sameAs":["https:\/\/kristianhulala.sk"],"gender":"mu\u017e"}]}},"_links":{"self":[{"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/pages\/3406","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/comments?post=3406"}],"version-history":[{"count":0,"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/pages\/3406\/revisions"}],"wp:attachment":[{"href":"https:\/\/kristianhulala.sk\/hu\/wp-json\/wp\/v2\/media?parent=3406"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}