{"id":3470,"date":"2026-03-19T11:27:24","date_gmt":"2026-03-19T11:27:24","guid":{"rendered":"https:\/\/kristianhulala.sk\/hogyan-elunk-az-epidermolysis-bullosaval\/"},"modified":"2026-03-28T15:07:53","modified_gmt":"2026-03-28T15:07:53","slug":"hogyan-elunk-az-epidermolysis-bullosaval","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/hu\/hogyan-elunk-az-epidermolysis-bullosaval\/","title":{"rendered":"Hogyan \u00e9l\u00fcnk az Epidermolysis Bullos\u00e1val"},"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 az \u00e9n t\u00f6rt\u00e9netem \u00e9s \u00e9letem a pillang\u00f3sz\u00e1rny-betegs\u00e9ggel<\/h1><\/div><div class=\"fusion-text fusion-text-1\"><p>Az Epidermolysis Bullosa egy ritka genetikai betegs\u00e9g, amelyet pillang\u00f3sz\u00e1rny-betegs\u00e9gk\u00e9nt is ismernek. Ebben a cikkben le\u00edrom szem\u00e9lyes t\u00f6rt\u00e9netemet \u00e9s mindennapi \u00e9letemet ezzel a betegs\u00e9ggel. <\/p>\n<h3 >Amivel naponta tal\u00e1lkozom<\/h3>\n<ul>\n<li>f\u00e1jdalmas sebek a b\u0151r\u00f6n \u00e9s a test belsej\u00e9ben<\/li>\n<li>nyel\u00e9si neh\u00e9zs\u00e9gek<\/li>\n<li>sebek napi k\u00f6t\u00f6z\u00e9se<\/li>\n<li>vas inf\u00fazi\u00f3k<\/li>\n<li>kr\u00f3nikus v\u00e9rszeg\u00e9nys\u00e9g (v\u00e9rvesztes\u00e9g a sebekb\u0151l)<\/li>\n<li>nagyon sz\u00e1raz szemek<\/li>\n<li>korl\u00e1tozott mozg\u00e1s<\/li>\n<\/ul>\n<h3 >A betegs\u00e9ggel kapcsolatos eg\u00e9szs\u00e9g\u00fcgyi probl\u00e9m\u00e1k<\/h3>\n<p>Ezzel a betegs\u00e9ggel sok egy\u00e9b eg\u00e9szs\u00e9g\u00fcgyi probl\u00e9ma j\u00e1r egy\u00fctt. Nemcsak k\u00edv\u00fcl vannak sebeim, hanem bel\u00fcl is.<\/p>\n<p>Speci\u00e1lis \u00e9trendre van sz\u00fcks\u00e9gem, \u00e9desany\u00e1mnak mindent le kell turmixolnia, mert nyel\u00e9si neh\u00e9zs\u00e9geim vannak. Nem tudok lenyelni kem\u00e9ny \u00e9s nagy \u00e9teldarabokat. Ha f\u00e9lrenyelek valamit, m\u00e9g a v\u00edz sem megy le a torkomon, \u00e9s gyakran meg kell k\u00fczdenem az\u00e9rt, hogy rendbe j\u00f6jjek.  <\/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 kisgyermekk\u00e9nt Epidermolysis Bullosa betegs\u00e9ggel\" 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>Az ilyen f\u00e9lrenyel\u00e9s nagyon f\u00e1jdalmas, \u00e9s m\u00e9g tov\u00e1bb s\u00falyosb\u00edthatja a nyel\u00e9si probl\u00e9m\u00e1kat.<\/p>\n<p>Az \u00e9trendem nagyon korl\u00e1tozott, mivel nem lehet mindent \u00fagy elk\u00e9sz\u00edteni \u00e9s leturmixolni, hogy meg tudjam enni. P\u00e9ld\u00e1ul a r\u00e1ntott h\u00fast, a kem\u00e9ny sajtokat vagy a kolb\u00e1szt. Amit nem lehet leturmixolni, azt megenni sem tudom \u2013 az ilyen \u00e9teleket csak megszagolhatom.  <\/p>\n<p>Rendszeresen j\u00e1rok csontritkul\u00e1s-vizsg\u00e1latra, mivel a betegs\u00e9g miatt ritkulnak a csontjaim. A fogaim m\u00e1r 10\u201312 \u00e9ves koromban kihullottak. <\/p>\n<p>V\u00e9rv\u00e9telre is j\u00e1rok, mert a sebekkel v\u00e9rt, \u00e9s ez\u00e1ltal hemoglobint is vesz\u00edtek. Inf\u00fazi\u00f3kra kell j\u00e1rnom, az injekci\u00f3k\u00e9rt pedig gyakran \u00f6nr\u00e9szt kell fizetnem. <\/p>\n<p>Rendszeresen j\u00e1rok szem\u00e9szetre is, mivel a szemem k\u00e1rosodott \u00e9s nagyon sz\u00e1raz. Az antibiotikumos cseppek\u00e9rt \u00f6nr\u00e9szt kell fizetnem, a t\u00f6bbit pedig magam v\u00e1s\u00e1rolom, mert nem receptk\u00f6telesek. Cseppek n\u00e9lk\u00fcl begyulladna a szemem, 3\u20134 napig nem tudn\u00e1m kinyitni, \u00e9s ez nagy f\u00e1jdalommal j\u00e1rna.  <\/p>\n<h3 >Napi gondoskod\u00e1s \u00e9s a sz\u00fcl\u0151k seg\u00edts\u00e9ge<\/h3>\n<p>\u00c9desany\u00e1m a sz\u00fclet\u00e9sem \u00f3ta otthon van velem, mert 24 \u00f3r\u00e1s fel\u00fcgyeletet ig\u00e9nylek. Minden nap reggel \u00e9s este teljes testk\u00f6t\u00f6z\u00e9st v\u00e9gz\u00fcnk, napk\u00f6zben pedig sz\u00fcks\u00e9g szerint. <\/p>\n<p><img decoding=\"async\" class=\"alignleft wp-image-93\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-300x247.jpg\" alt=\"Gyermekkor \u00e9s \u00e9let az Epidermolysis Bullos\u00e1val az udvaron\" 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>Egy reggeli k\u00f6t\u00f6z\u00e9s sosem tart ki estig. Mindig be kell kenni valamit, \u00fajra kell k\u00f6t\u00f6zni, vagy le kell cser\u00e9lni a tapaszt. <\/p>\n<p>M\u00e9g a h\u00e9tk\u00f6znapi dolgokkal sem boldogulok \u2013 nem tudok magamnak \u00e9telt szedni, kinyitni egy \u00fcveg vizet, \u00e9s 2 kg-ot sem b\u00edrok el. Mind\u00f6ssze 43 kg vagyok 180 cm-es magass\u00e1ghoz. <\/p>\n<p>\u00c9desany\u00e1m a jobb kezem \u2013 elk\u00e9sz\u00edti az \u00e9telemet, seg\u00edt a tiszt\u00e1lkod\u00e1sban, \u00e9s mindenben gondoskodik r\u00f3lam. M\u00e9rhetetlen\u00fcl h\u00e1l\u00e1s vagyok neki ez\u00e9rt. Ha nem lenn\u00e9nek szeret\u0151 sz\u00fcleim, ma m\u00e1r nem lenn\u00e9k itt.  <\/p>\n<p>\u00c9desap\u00e1m hord a vizsg\u00e1latokra, mert a fert\u0151z\u00e9svesz\u00e9ly miatt nem utazhatok ment\u0151vel. Ehelyett az \u00fczemanyagot nek\u00fcnk kell fizetn\u00fcnk. <\/p>\n<p>Gyenge az izomzatom \u2013 legfeljebb 15 m\u00e9tert tudok megtenni, \u00e9s azonnal elf\u00e1radok, kifulladok, le kell \u00fcln\u00f6m.<\/p>\n<h3 >Otthoni \u00e9let \u00e9s hobbijeim<\/h3>\n<p>18 \u00e9ves korom \u00f3ta rokkants\u00e1gi nyugd\u00edjas vagyok, mivel nem tudok dolgozni.<\/p>\n<p><img decoding=\"async\" class=\"alignright wp-image-94\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-300x212.jpg\" alt=\"Otthoni \u00e9let az Epidermolysis Bullos\u00e1val a sz\u00e1m\u00edt\u00f3g\u00e9pn\u00e9l\" 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>Id\u0151m nagy r\u00e9sz\u00e9t a sz\u00e1m\u00edt\u00f3g\u00e9p el\u0151tt t\u00f6lt\u00f6m. \u00c9rdekelnek a technol\u00f3gi\u00e1k, vide\u00f3k, cikkek, valamint a tudom\u00e1ny \u00e9s a vil\u00e1g\u0171r \u00e9rdekess\u00e9gei. Sz\u00edvesen n\u00e9zek YouTube-ot, \u00e9s n\u00e9ha j\u00e1tszom is.  <\/p>\n<p>Sok id\u0151t t\u00f6lt\u00f6k a kuty\u00e1immal is, \u00e9s \u00e9desany\u00e1mmal r\u00f6vid s\u00e9t\u00e1kra j\u00e1runk.<\/p>\n<h3 >Gy\u00f3gy\u00edt\u00f3 tart\u00f3zkod\u00e1sok a tengern\u00e9l<\/h3>\n<p>Amikor siker\u00fcl f\u00e9lretenn\u00fcnk, gy\u00f3gy\u00fcd\u00fcl\u00e9sre j\u00e1runk a tengerhez Horv\u00e1torsz\u00e1gba.<\/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=\"Gy\u00f3gy\u00fcd\u00fcl\u00e9s Horv\u00e1torsz\u00e1gban a tengern\u00e9l\" 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>A tengerbe nem mehetek be, mert a s\u00f3 rontana a sebeimen. Seg\u00edt viszont a j\u00f3dos leveg\u0151, amely el\u0151seg\u00edti a gy\u00f3gyul\u00e1st \u00e9s a l\u00e9gz\u00e9st. <\/p>\n<p>A k\u00f6rnyezetv\u00e1ltoz\u00e1s sokat seg\u00edt nekem. Horv\u00e1torsz\u00e1gban jobban \u00e9rzem magam, mint otthon, ami sz\u00e1momra nagyon k\u00fcl\u00f6n\u00f6s, de egyben biztat\u00f3 is. <\/p>\n<h3 >Kutyusaim<\/h3>\n<p>Van k\u00e9t yorkie fajt\u00e1j\u00fa kuty\u00e1m, akik olyanok sz\u00e1momra, mintha csal\u00e1dtagok lenn\u00e9nek. \u00d6r\u00f6met okoznak nekem, \u00e9s seg\u00edtenek, hogy ne gondoljak folyton a f\u00e1jdalomra. <\/p>\n<h3 >\u00c9vszakok \u00e9s kar\u00e1csony<\/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=\"Kar\u00e1csony \u00e9s \u00e9let az Epidermolysis Bullos\u00e1val\" 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>A ny\u00e1rban azt szeretem, hogy az udvaron lehetek \u00e9s pihenhetek. A t\u00e9lben a kar\u00e1csonyt im\u00e1dom \u2013 a hangulat\u00e1t, a d\u00edsz\u00edt\u00e9st \u00e9s a b\u00e9k\u00e9t. <\/p>\n<p>M\u00e1r okt\u00f3bert\u0151l kar\u00e1csonyi filmeket n\u00e9zek, \u00e9s a decembert el sem tudom k\u00e9pzelni n\u00e9lk\u00fcl\u00fck \ud83d\ude42<\/p>\n<h3 >K\u00f6sz\u00f6n\u00f6m a seg\u00edts\u00e9get<\/h3>\n<p>\u00d6n\u00f6knek k\u00f6sz\u00f6nhet\u0151en 2019-ben megvehettem az elektromos j\u00e1rm\u0171vet, az <a href=\"https:\/\/kristianhulala.sk\/hu\/az-elektromos-kerekesszekem-airwheel-h3s\/\" target=\"_blank\" rel=\"noopener\">AirWheel H3s<\/a>-t, \u00e9s egy nagy teljes\u00edtm\u00e9ny\u0171 <a href=\"https:\/\/kristianhulala.sk\/hu\/az-uj-lian-li-lancool-216-gamer-szamitogepem-a-tichepc-sk-tol\/\" target=\"_blank\" rel=\"noopener\">j\u00e1t\u00e9ksz\u00e1m\u00edt\u00f3g\u00e9pet<\/a> is.<\/p>\n<p>\u00d6r\u00fcl\u00f6k, hogy a sz\u00fcleimnek k\u00f6sz\u00f6nhet\u0151en eljutottam id\u00e1ig, \u00e9s ma m\u00e1r 39 \u00e9ves vagyok. Minden probl\u00e9ma ellen\u00e9re igyekszem a lehet\u0151 legjobban \u00e9lni. <\/p>\n<p><strong>Minden p\u00e9nzbeli adom\u00e1nyt kiz\u00e1r\u00f3lag gy\u00f3gyszerekre, vitaminokra \u00e9s gy\u00f3gy\u00e1szati seg\u00e9deszk\u00f6z\u00f6kre ford\u00edtok.<\/strong><\/p>\n<p><strong>Tiszta sz\u00edvb\u0151l k\u00f6sz\u00f6n\u00f6m mindenkinek, aki \u00fagy d\u00f6nt, hogy seg\u00edt nekem.<\/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-3470","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>\u00c9let az Epidermolysis Bullos\u00e1val \u2013 az \u00e9n t\u00f6rt\u00e9netem (pillang\u00f3sz\u00e1rny-betegs\u00e9g)<\/title>\n<meta name=\"description\" content=\"Olvassa el szem\u00e9lyes t\u00f6rt\u00e9netemet az Epidermolysis Bullos\u00e1val val\u00f3 \u00e9letr\u0151l. 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