{"id":11981,"date":"2026-10-26T11:17:14","date_gmt":"2026-10-26T11:17:14","guid":{"rendered":"https:\/\/www.priora.eu\/news\/djeca-leptiri-zivot-s-bolescu-zbog-koje-i-najnjezniji-dodir-moze-izazvati-bol\/"},"modified":"2026-10-26T13:55:06","modified_gmt":"2026-10-26T13:55:06","slug":"djeca-leptiri-zivot-s-bolescu-zbog-koje-i-najnjezniji-dodir-moze-izazvati-bol","status":"publish","type":"news","link":"https:\/\/www.priora.eu\/en\/news\/butterfly-children-living-with-a-condition-where-even-the-gentlest-touch-can-cause-pain\/","title":{"rendered":"\u201cButterfly Children\u201d \u2013 Living with a Condition Where Even the Gentlest Touch Can Cause Pain"},"content":{"rendered":"\n

International Epidermolysis Bullosa Awareness Week is observed every year from 25 to 31 October.<\/em><\/p>\n\n\n\n

There are people for whom even the gentlest touch can cause pain. Their skin is so fragile that the slightest friction can lead to painful blisters and wounds. Delicate and vulnerable, much like the wings of a butterfly, their skin is the reason why people living with epidermolysis bullosa (EB)<\/strong> are often referred to as \u201cbutterfly children\u201d.<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Behind this gentle name lies a daily reality filled with challenges, pain and constant caution. Epidermolysis bullosa is characterised by extreme skin fragility, with burn-like wounds<\/strong> developing easily. The condition can also cause complications affecting the mucous membranes of the eyes, mouth and digestive tract.<\/p>\n\n\n\n

Epidermolysis Bullosa: A Rare Condition That Changes Everyday Life<\/strong><\/h2>\n\n\n\n

International Epidermolysis Bullosa Awareness Week<\/strong> is observed every year from 25 to 31 October. Its origins date back to 1984, when an initiative was introduced in the United States Congress to raise public awareness of the medical and everyday challenges faced by people living with the condition.<\/p>\n\n\n\n

\u201cIt is a congenital condition that is often identified immediately after birth, as injuries can occur during delivery. In my case, one of my feet was visibly affected. Based on this, along with several other bullae, or blisters, doctors immediately recognised that I had epidermolysis bullosa,\u201d<\/em> explained Mirza Kahriman<\/a><\/strong>, a man from Sarajevo living with this rare condition.<\/p>\n\n\n\n

\"\"<\/a><\/figure>\n\n\n\n

Epidermolysis bullosa is a genetic condition<\/strong> caused by mutations in genes responsible for producing proteins that connect and strengthen the structures of the skin. When the connections between individual skin layers are impaired, even mild mechanical friction can cause the tissue to separate, resulting in blisters and open wounds.<\/p>\n\n\n\n

How Does the Condition Affect Hand Function?<\/strong><\/h3>\n\n\n\n

\u201cOver time, the skin\u2019s ability to regenerate weakens because it is constantly being injured. This also leads to joint contractures, resulting in permanent limitations of movement. The hands are particularly vulnerable and tend to be affected the earliest and most severely because we use them so frequently and, unlike other parts of the body, they are not protected by clothing,\u201d<\/em> he added.<\/p>\n\n\n\n

In Mirza\u2019s case, the most pronounced effects of the condition are also visible on his hands, where his fingers have become almost completely fused together.<\/p>\n\n\n\n

Surgery at Priora: A New Approach to Hand Reconstruction<\/strong><\/h3>\n\n\n\n

Last year, he underwent surgery at the International Medical Centre Priora<\/a><\/strong>, performed by plastic surgeon Professor Milomir Ninkovi\u0107, MD, PhD<\/a><\/strong>.<\/p>\n\n\n\n

\u201cI had previously undergone four procedures to separate my fingers, but the results were very poor. The skin graft would come off during the first dressing change, leaving my entire hand exposed as an open wound. Healing would take six months of complete agony, and the skin would ultimately be in an even worse condition. Professor Ninkovi\u0107 approached my problem in a completely different way. He took the gracilis muscle, together with skin and fatty tissue, from my right thigh and transplanted it to the areas of my left hand where he had separated the fingers,\u201d<\/em> Mirza explained.<\/p>\n\n\n\n

The procedure gave Mirza a new opportunity to improve hand function and quality of life, despite the ongoing challenges associated with this rare condition.<\/p>\n","protected":false},"excerpt":{"rendered":"

Epidermolysis bullosa is a rare genetic condition that causes painful skin wounds. Discover Mirza\u2019s story and his hand reconstruction surgery at Priora.<\/p>\n","protected":false},"featured_media":11979,"template":"","news-category":[21],"class_list":["post-11981","news","type-news","status-publish","has-post-thumbnail","hentry","news-category-for-profesionals"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/news\/11981","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/news"}],"about":[{"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/types\/news"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/media\/11979"}],"wp:attachment":[{"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/media?parent=11981"}],"wp:term":[{"taxonomy":"news-category","embeddable":true,"href":"https:\/\/www.priora.eu\/en\/wp-json\/wp\/v2\/news-category?post=11981"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}