Oblé hrany, měkké látky. V Brně otevřeli nový pokoj pro děti s nemocí motýlích křídel

30. 4. 2024

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Ve Fakultní nemocnici Brno je jediné tuzemské vysoce specializované centrum pro pacienty s nemocí motýlích křídel. Nově v něm mají pokoj uzpůsobený přímo potřebám nemocných dětí. Peníze na rekonstrukci vybrala pacientská organizace DEBRA.

Nový pokojíček dětem a jejich doprovodu slouží od března ve Fakultní nemocnici Brno. Na tamějším Dětském kožním oddělení Pediatrické kliniky působí EB Centrum, jediné vysoce specializované centrum péče o pacienty s nemocí motýlích křídel v Česku. Zkratka EB pochází z latinského názvu nemoci Epidermolysis bullosa congenita

Jak je pokoj vybaven

Pokoj je určen nemocným dětem a jejich doprovodu. Aby se děti cítily pohodlně a bezpečně, je vybaven nábytkem s oblými hranami a měkkými textiliemi. Jeho součástí je pro převaz nezbytný přebalovací kout nebo lednice pro uchovávání speciální výživy, kterou děti s nemocí motýlích křídel kvůli křehkosti jícnu a trávicího traktu často potřebují. 

Materiál nábytku na míru nebo třeba podlahy byly voleny tak, aby šly důkladně vydezinfikovat. Pokoj je vybaven také klimatizací, protože v horku se stav kůže pacientů s touto diagnózou výrazně zhoršuje.

Češi zkoumají geny, kvůli kterým vážně onemocní tisíce dětí ročně Přečtěte si také:

Češi zkoumají geny, kvůli kterým vážně onemocní tisíce dětí ročně

Půl milionu sehnala pacientská organizace

Unikátní je nejen vybavení, ale i to, že jeho rekonstrukci, která si vyžádala i drobné stavební úpravy, zajistila a financovala pacientská organizace DEBRA ČR výtěžkem z charitativního hokejového utkání a prodejem triček s opačně šitými švy

Náklady na vznik nového pokoje se vyšplhaly téměř na půl milionu korun.

Novinka přišla jako na zavolanou, EB Centrum i rodiny v první polovině letošního roku očekávají spuštění klinického testování nového přípravku pro malé pacienty, který by měl přinést posun v možnostech léčby. Děti, které se do studie zapojí, tak budou mít během nezbytné hospitalizace dostatek pohodlí.

Co je nemoc motýlích křídel

Jak připomíná web DEBRA ČR, nemoc motýlích křídel, tedy Epidermolysis bullosa congenita, je vzácné vrozené dědičné puchýřnaté onemocnění. Doposud nevyléčitelné.

Pacienti mají velice jemnou, citlivou a lehce zranitelnou kůži a sliznice. I mírný tlak či tření způsobuje tvorbu puchýřů a bolestivých, otevřených ran. Projevy onemocnění jsou velmi rozmanité a ovlivňují celý organismus. Jejich důsledkem je to, že nemocní neznají den bez bolesti.

Autor článku

Redaktorka Vitalia.cz. Vystudovala žurnalistiku a češtinu na Univerzitě Palackého v Olomouci, pracovala v Deníku, na webu TV Nova a iDNES.cz. Píše o zdravotnictví. Je držitelkou novinářských cen Psychiatrické společností ČLS JEP za rok 2021 a 2022. 

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Upozorníme vás na články, které by vám neměly uniknout (maximálně 2x týdně).
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