{"id":3423,"date":"2026-03-19T11:25:05","date_gmt":"2026-03-19T11:25:05","guid":{"rendered":"https:\/\/kristianhulala.sk\/what-its-like-living-with-epidermolysis-bullosa\/"},"modified":"2026-03-28T15:07:54","modified_gmt":"2026-03-28T15:07:54","slug":"what-its-like-living-with-epidermolysis-bullosa","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/en\/what-its-like-living-with-epidermolysis-bullosa\/","title":{"rendered":"What it\u2019s like living with 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 my story and life with butterfly skin disease<\/h1><\/div><div class=\"fusion-text fusion-text-1\"><p>Epidermolysis Bullosa is a rare genetic condition also known as butterfly skin disease. In this article, I describe my personal story and everyday life with this condition. <\/p>\n<h3 >What I deal with every day<\/h3>\n<ul>\n<li>painful wounds on the skin and inside the body<\/li>\n<li>difficulty swallowing food<\/li>\n<li>daily wound dressings<\/li>\n<li>iron infusions<\/li>\n<li>chronic anemia (blood loss from wounds)<\/li>\n<li>very dry eyes<\/li>\n<li>limited mobility<\/li>\n<\/ul>\n<h3 >Health issues associated with the disease<\/h3>\n<p>This disease is associated with many other health problems. I have wounds not only on the outside, but also on the inside.<\/p>\n<p>My food has to be special, my mom has to blend everything for me because I have trouble swallowing. I can&#8217;t swallow hard and large pieces of food. When something goes down the wrong way, even water won&#8217;t go down my throat and I often struggle to sort it out.  <\/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 as a young child with 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>This kind of choking is very painful and can make swallowing problems even worse.<\/p>\n<p>My diet is very limited, as not everything can be prepared and blended in a way I can eat. For example, fried meat, hard cheeses, or sausage. What can&#8217;t be blended, I can&#8217;t eat \u2013 I can only smell such foods.  <\/p>\n<p>I regularly go for osteoporosis checkups, as my bones are thinning due to the disease. My teeth fell out when I was 10\u201312 years old. <\/p>\n<p>I also go for blood tests because I lose blood with the wounds and therefore hemoglobin. I have to go for infusions, and I often have to pay extra for injections. <\/p>\n<p>I regularly go for eye exams, as my eyes are damaged and very dry. I have to pay extra for antibiotic drops and buy the others myself because they&#8217;re not on prescription. Without the drops, my eyes would be inflamed, I wouldn&#8217;t be able to open them for 3\u20134 days, and it would be very painful.  <\/p>\n<h3 >Daily care and my parents\u2019 help<\/h3>\n<p>My mom has been home with me since I was born because I require 24-hour care. Every day, morning and evening, we do a full body dressing change and during the day as needed. <\/p>\n<p><img decoding=\"async\" class=\"alignleft wp-image-93\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041308131000-300x247.jpg\" alt=\"Childhood and life with Epidermolysis Bullosa in the yard\" 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>One morning dressing never lasts until evening. There&#8217;s always something to moisturize, bandage, or change a dressing on. <\/p>\n<p>I can&#8217;t manage even ordinary things \u2013 I can&#8217;t scoop food, open a bottle of water, and I can&#8217;t carry even 2 kg. I weigh only 43 kg at a height of 180 cm. <\/p>\n<p>My mom is my right hand \u2013 she prepares my food, helps with hygiene, and takes care of me in everything. I&#8217;m incredibly grateful to her. If I didn&#8217;t have loving parents, I wouldn&#8217;t be here today.  <\/p>\n<p>My father drives me to checkups because I can&#8217;t go by ambulance due to the risk of infection. Instead, we have to pay for fuel. <\/p>\n<p>I have weakened muscles \u2013 I can walk a maximum of 15 meters and I&#8217;m immediately tired, out of breath, and have to sit down.<\/p>\n<h3 >Life at home and my hobbies<\/h3>\n<p>I&#8217;ve been on disability pension since I was 18, as I can&#8217;t work.<\/p>\n<p><img decoding=\"async\" class=\"alignright wp-image-94\" src=\"https:\/\/kristianhulala.sk\/wp-content\/uploads\/2021\/09\/201907041316441000-300x212.jpg\" alt=\"Life at home with Epidermolysis Bullosa at the computer\" 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>I spend most of my time at the computer. I&#8217;m interested in technology, videos, articles, and various interesting things from the world of science and space. I like watching YouTube and occasionally playing games.  <\/p>\n<p>I also spend a lot of time with my dogs and go on short walks with my mom.<\/p>\n<h3 >Therapeutic stays by the sea<\/h3>\n<p>When we manage to save up, we go on healing stays by the sea in Croatia.<\/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=\"Healing stay in Croatia by the sea\" 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>I can&#8217;t go into the sea because the salt would make my wounds worse. However, the iodine air helps me, which supports healing and breathing. <\/p>\n<p>The change of environment helps me a lot. In Croatia I feel better than at home, which is very strange to me, but at the same time encouraging. <\/p>\n<h3 >My dogs<\/h3>\n<p>I have two Yorkie dogs who are like family to me. They bring me joy and help me not think about the pain all the time. <\/p>\n<h3 >Seasons and Christmas<\/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=\"Christmas and life with 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>What I love about summer is that I can be in the yard and relax. In winter I love Christmas \u2013 its atmosphere, decorations, and peace. <\/p>\n<p>I watch Christmas movies from October onwards and I can&#8217;t imagine December without them \ud83d\ude42<\/p>\n<h3 >Thank you for your help<\/h3>\n<p>Thanks to you, in 2019 I was able to buy an electric wheelchair <a href=\"https:\/\/kristianhulala.sk\/en\/my-electric-wheelchair-airwheel-h3s\/\" target=\"_blank\" rel=\"noopener\">AirWheel H3s<\/a> and a powerful <a href=\"https:\/\/kristianhulala.sk\/en\/my-new-lian-li-lancool-216-gaming-pc-from-tichepc-sk\/\" target=\"_blank\" rel=\"noopener\">gaming PC<\/a>.<\/p>\n<p>I&#8217;m glad that thanks to my parents I&#8217;ve made it this far and today I&#8217;m 39 years old. Despite all the problems, I try to live as best I can. <\/p>\n<p><strong>I use all financial donations exclusively for medicines, vitamins, and medical supplies.<\/strong><\/p>\n<p><strong>To everyone who decides to help me, I thank you from the bottom of my heart.<\/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-3423","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>Living with Epidermolysis Bullosa \u2013 my story (butterfly skin disease)<\/title>\n<meta name=\"description\" content=\"Read my personal story of living with Epidermolysis Bullosa. 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