N\u00e1dory a cysty se jim tvo\u0159\u00ed a\u017e na 10 m\u00edstech v t\u011ble, mnohdy jde o nezhoubn\u00e9 \u00fatvary, p\u0159esto pacienty s von Hippel-Lindauovou chorobou omezuj\u00ed, z\u00e1rove\u0148 mohou ni\u010dit okoln\u00ed zdrav\u00e9 org\u00e1ny, mozek, ledviny nebo slinivku. Nemoc je zr\u00e1dn\u00e1 \u0159adou r\u016fzn\u00fdch projev\u016f, i proto se do osv\u011bty zapojili sami pacienti.<\/p>\n\n\n\n
Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Ve 13 p\u0159estala Lucie Ryby\u0161arov\u00e1 vid\u011bt na jedno oko, pak j\u00ed objevili n\u00e1dor v moze\u010dku i m\u00ed\u0161e. <\/p>\n\n\n\n Lucie Ryby\u0161arov\u00e1, pacientka s tzv. von Hippel-Lindauovou chorobou (VHL)<\/strong> M\u00e1m celou \u0159adu r\u016fzn\u00fdch n\u00e1dor\u016f v t\u011ble, j\u00e1 je nepo\u010d\u00edt\u00e1m a mysl\u00edm, \u017ee te\u010f u\u017e je nepo\u010d\u00edtaj\u00ed ani na magnetick\u00e9 rezonanci, jenom vlastn\u011b pozoruj\u00ed, jestli se zv\u011bt\u0161uj\u00ed nebo co vlastn\u011b d\u011blaj\u00ed. K t\u00e9 diagn\u00f3ze pat\u0159\u00ed i riziko zhoubn\u00fdch n\u00e1dor\u016f, co\u017e teda j\u00e1 jsem taky m\u011bla karcinom ledviny.<\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm \u017eije t\u00e9m\u011b\u0159 30 let. Podle l\u00e9ka\u0159\u016f na n\u011bj z\u0159ejm\u011b zem\u0159ela jej\u00ed matka i babi\u010dka. Sama Lucie byla p\u0159ed dv\u011bma lety v kritick\u00e9m stavu. <\/p>\n\n\n\n Lucie Ryby\u0161arov\u00e1, pacientka s tzv. von Hippel-Lindauovou chorobou (VHL)<\/strong> J\u00e1 u\u017e jsem m\u011bla tak velk\u00e9 bolesti, \u017ee jsem byla na opi\u00e1tech a nemohla jsem sp\u00e1t, nemohla jsem chodit do pr\u00e1ce. Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Biologick\u00e1 l\u00e9\u010dba nezab\u00edrala, pomohla nov\u00e1 terapie. <\/p>\n\n\n\n Lucie Ryby\u0161arov\u00e1, pacientka s tzv. von Hippel-Lindauovou chorobou (VHL)<\/strong> Tady je vlastn\u011b vid\u011bt ten n\u00e1dor s tou cystou, je vid\u011bt, jak je tam ten \u00fatlak vlastn\u011b.<\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> To je co? <\/p>\n\n\n\n Lucie Ryby\u0161arov\u00e1, pacientka s tzv. von Hippel-Lindauovou chorobou (VHL)<\/strong> To b\u00edl\u00fd, tam tohle b\u00edl\u00fd tam vlastn\u011b nepat\u0159\u00ed, tahle ta \u017e\u00ed\u017eala. Po 10 m\u011bs\u00edc\u00edch je vid\u011bt, jak m\u00e1m kr\u00e1sn\u011b souvislou tu m\u00edchu. <\/p>\n\n\n\n Alexandr Poprach, z\u00e1stupce p\u0159ednosty pro l\u00e9\u010debn\u011b preventivn\u00ed p\u00e9\u010di<\/strong> J\u00e1 jsem stra\u0161n\u011b r\u00e1d, \u017ee jsme se do\u010dkali velk\u00e9ho pr\u016flomu. Doch\u00e1z\u00ed nejen ke zmen\u0161en\u00ed t\u011bch n\u00e1dor\u016f, dokonce v n\u011bkter\u00e9m p\u0159\u00edpad\u011b a\u017e vymizen\u00ed, ale ta odpov\u011b\u010f je dlouhodob\u00e1<\/p>\n\n\n\n . Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Drahou l\u00e9\u010dbu v zahrani\u010d\u00ed Lucie zaplatila d\u00edky sb\u00edrce, te\u010f u\u017e je l\u00e9k schv\u00e1len\u00fd Evropskou uni\u00ed a tuzemsk\u00e9 poji\u0161\u0165ovny ji propl\u00e1c\u00ed. P\u0159ed rokem zalo\u017eila pacientskou organizaci. Do osv\u011bty se zapojili i l\u00e9ka\u0159i. <\/p>\n\n\n\n Alexandr Poprach, z\u00e1stupce p\u0159ednosty pro l\u00e9\u010debn\u011b preventivn\u00ed p\u00e9\u010di<\/strong> Pokud ten pacient j\u00ed \u0161\u00ed\u0159\u00ed a pom\u00e1h\u00e1 t\u011bm pacient\u016fm stejn\u011b posti\u017een\u00fdm, tak je to obrovsk\u00fd motiva\u010dn\u00ed prvek. <\/p>\n\n\n\n Lucie Ryby\u0161arov\u00e1, pacientka s tzv. von Hippel-Lindauovou chorobou (VHL)<\/strong> N\u00e1s vlastn\u011b mus\u00ed sledovat i cel\u00e1 \u0159ada l\u00e9ka\u0159\u016f a je super, kdy\u017e my se m\u016f\u017eeme propojit a m\u016f\u017eeme si \u0159\u00edct, kde m\u00e1me dobrou zku\u0161enost s l\u00e9ka\u0159i, kde oni vlastn\u011b tu diagn\u00f3zu znaj\u00ed. <\/p>\n\n\n\n Lea Surovcov\u00e1, redaktorka \u010cT<\/strong> Lucie za\u010dala znovu pracovat, p\u0159edn\u00e1\u0161\u00ed na vysok\u00e9 \u0161kole i v domovech pro seniory. <\/p>\n\n\n\n \u010cesk\u00e1 televize.<\/p>\n","protected":false},"excerpt":{"rendered":" N\u00e1dory a cysty se jim tvo\u0159\u00ed a\u017e na 10 m\u00edstech v t\u011ble, mnohdy jde o nezhoubn\u00e9 \u00fatvary, p\u0159esto pacienty s von Hippel-Lindauovou chorobou omezuj\u00ed, z\u00e1rove\u0148 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":50140,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-63385","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63385","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=63385"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63385\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/50140"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=63385"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63385"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63385"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}