{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Janka Franc\u00fazov\u00e1: zriedkav\u00e1 choroba je boj o d\u00f4stojn\u00fd \u017eivot","description":"\u201eOdhaduje sa, \u017ee a\u017e 1 z 20 \u013eud\u00ed na svete bude v istej chv\u00edli svojho \u017eivota \u010deli\u0165 zriedkavej chorobe. Pritom a\u017e 70% \u013eud\u00ed so zriedkavou chorobou \u017eije na hranici chudoby.&quot; (Zdroj:  sazch.sk). Ak\u00fd je \u017eivot so zriedkavou chorobou? Ka\u017edodenn\u00e9 v\u00fdzvy, finan\u010dn\u00e9 n\u00e1roky lie\u010dby, nedostatky v syst\u00e9me soci\u00e1lnej podpory \u010di in\u00e9 potreby pacientov? Vikt\u00f3ria Lanco\u0161ov\u00e1 sa o soci\u00e1lnom dopade zriedkav\u00fdch chor\u00f4b na \u017eivot pacientov rozpr\u00e1vala s Jankou Franc\u00fazovou, zdravotnou sestri\u010dkou na dial\u00fdze a z\u00e1rove\u0148 pacientkou so syst\u00e9mov\u00fdm lupusom, chronick\u00fdm autoimunitn\u00fdm ochoren\u00edm. Janka prostredn\u00edctvom vlastn\u00e9ho pr\u00edbehu opisuje \u0165a\u017ekosti s diagnostikou, n\u00e1ro\u010dnos\u0165 ka\u017edodenn\u00e9ho fungovania a psychick\u00e9 dopady \u017eivota so zriedkavou chorobou. Pon\u00faka unik\u00e1tny poh\u013ead na prekon\u00e1vanie n\u00e1ro\u010dn\u00fdch v\u00fdziev s mimoriadnym optimizmom a bojovnos\u0165ou a empatiu a porozumenie vo\u010di pacientom. Jej pr\u00edbeh z\u00e1rove\u0148 zd\u00f4raz\u0148uje potrebu osvety a otvorenej komunik\u00e1cie o zriedkav\u00fdch chorob\u00e1ch a poukazuje na d\u00f4le\u017eitos\u0165 podpory z okolia pacientov. EV 157\/23\/EPP| 5. ro\u010dn\u00edk | epiz\u00f3da 07\/2025 ","author_name":"ZDRAV\u00c9 RE\u010cI","author_url":"http:\/\/zdravereci.libsyn.com\/website","html":"<iframe title=\"Libsyn Player\" style=\"border: none\" src=\"\/\/html5-player.libsyn.com\/embed\/episode\/id\/39673555\/height\/90\/theme\/custom\/thumbnail\/yes\/direction\/forward\/render-playlist\/no\/custom-color\/88AA3C\/\" height=\"90\" width=\"600\" scrolling=\"no\"  allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen><\/iframe>","thumbnail_url":"https:\/\/assets.libsyn.com\/secure\/content\/197483860"}