Prima<\/p>\n\n\n\n
Friedreichova ataxie je z\u00e1va\u017en\u00e1 d\u011bdi\u010dn\u00e1 nemoc, kter\u00e1 se projevuje postupn\u00fdm ochabov\u00e1n\u00edm svalstva. Pacient pak kon\u010d\u00ed na invalidn\u00edm voz\u00edku. Ned\u00e1 se vyl\u00e9\u010dit, ale existuje l\u00e9k, kter\u00fd zm\u00edrn\u00ed p\u0159\u00edznaky a kter\u00fd mohou hradit poji\u0161\u0165ovny. P\u0159esto\u017ee \u017eije v \u010cesku n\u011bkolik des\u00edtek pacient\u016f s takovou diagn\u00f3zou, n\u011bkter\u00fdm poji\u0161\u0165ovna l\u00e9k hrad\u00ed a jin\u00fdm zase ne. <\/p>\n\n\n\n
Monika Ber\u00e1nkov\u00e1, redaktorka<\/strong> Tohle je pan Milo\u0161. Jemu 37 let a Friedreichovu ataxii mu diagnostikovali v 15 letech. <\/p>\n\n\n\n Milo\u0161 Ladra, pacient<\/strong> Padaly mi r\u016fzn\u00e9 v\u011bci, zakop\u00e1val jsem. Stejn\u011b tak se mi zhor\u0161ovala skoli\u00f3za p\u00e1te\u0159e a p\u0159idaly se i dal\u0161\u00ed p\u0159\u00edznaky jako neuropatie. Nejpodstatn\u011bj\u0161\u00ed je ta koordinace a \u0159e\u010d, to m\u011b nejv\u00edc omezuje.<\/p>\n\n\n\n Martin Vyhn\u00e1lek, neurolog, Neurologick\u00e1 klinika dosp\u011bl\u00fdch 2. LF UK a FN Motol v Praze<\/strong> Prvn\u00ed p\u0159\u00edznaky v\u011bt\u0161inou b\u00fdvaj\u00ed nen\u00e1padn\u00e9 zakop\u00e1v\u00e1n\u00ed, porucha stability a koordinace. Sou\u010dasn\u011b po n\u011bkolika letech za\u010dnou sl\u00e1bnout kon\u010detiny a to je to, co dovede pacienty na voz\u00edk. <\/p>\n\n\n\n Monika Ber\u00e1nkov\u00e1, redaktorka<\/strong> Diagn\u00f3zou, kterou m\u00e1 pan Milo\u0161, trp\u00ed dal\u0161\u00edch zhruba 50 pacient\u016f. Nemoc je nevyl\u00e9\u010diteln\u00e1, ale od lo\u0148sk\u00e9ho roku je v \u010cesku k dispozici l\u00e9k, kter\u00fd m\u016f\u017ee jej\u00ed pr\u016fb\u011bh zm\u00edrnit. Jeho cena je ale velmi vysok\u00e1. <\/p>\n\n\n\n Jan K\u0159\u00ed\u017e, kamar\u00e1d Milo\u0161e<\/strong> M\u011bs\u00ed\u010dn\u011b ta \u010d\u00e1stka vych\u00e1z\u00ed na n\u011bjak\u00fdch 688 000, co\u017e je za rok d\u011bl\u00e1 necel\u00fdch 8 400 000. <\/p>\n\n\n\n Milo\u0161 Ladra, pacient<\/strong> Ta l\u00e9\u010dba je velmi n\u00e1kladn\u00e1, dostupn\u00e1 v\u00edcem\u00e9n\u011b. Ale bohu\u017eel na ni nedos\u00e1hnu, i kdybych cht\u011bl. M\u00e1m zam\u011bstn\u00e1n\u00ed na m\u011bstsk\u00e9m \u00fa\u0159ad\u011b a z\u00e1rove\u0148 m\u00e1m invalidn\u00ed d\u016fchod. <\/p>\n\n\n\n Monika Ber\u00e1nkov\u00e1, redaktorka<\/strong> L\u00e9k m\u016f\u017eou proplatit poji\u0161\u0165ovny. Podle pacient\u016f jde ale sp\u00ed\u0161e o loterii, proto\u017ee poji\u0161\u0165ovny n\u011bkomu l\u00e9k zaplat\u00ed, jin\u00e9mu ale ne. <\/p>\n\n\n\n Martin Vyhn\u00e1lek, neurolog, Neurologick\u00e1 klinika dosp\u011bl\u00fdch 2. LF UK a FN Motol v Praze<\/strong> Ze za\u010d\u00e1tku vlastn\u011b v\u0161echny ty \u017e\u00e1dosti, kter\u00fd jsme pod\u00e1vali, tak oni schv\u00e1lili a pak v ur\u010dit\u00fd f\u00e1zi se zalekli a \u0161lo to \u00fapln\u011b do druh\u00fdho extr\u00e9mu, \u017ee to p\u0159estali schvalovat t\u00e9m\u011b\u0159 u v\u0161ech lid\u00ed. <\/p>\n\n\n\n Viktorie Pl\u00edvov\u00e1, mluv\u010d\u00ed, V\u0161eobecn\u00e1 zdravotn\u00ed poji\u0161\u0165ovna<\/strong> VZP hrad\u00ed p\u0159\u00edpravek Skyclarys u\u017e 12 pacient\u016fm. V dev\u00edti p\u0159\u00edpadech jsme museli \u017e\u00e1dost o v\u00fdjimku zam\u00edtnout. <\/p>\n\n\n\n Jana Schillerov\u00e1, mluv\u010d\u00ed, ZP MV \u010cR<\/strong> Pokud se jedn\u00e1 o l\u00e9k Skyclarys, tak o n\u011bj \u017e\u00e1dalo p\u011bt na\u0161ich poji\u0161t\u011bnc\u016f. Zam\u00edtli jsme p\u011bt \u017e\u00e1dost\u00ed s od\u016fvodn\u011bn\u00edm, \u017ee S\u00daKL nestanovil \u00fahradu. L\u00e9k neu\u017e\u00edv\u00e1 \u017e\u00e1dn\u00fd n\u00e1\u0161 poji\u0161t\u011bnec.<\/p>\n\n\n\n Monika Ber\u00e1nkov\u00e1, redaktorka<\/strong> O l\u00e9k \u017e\u00e1ddal ne\u00fasp\u011b\u0161n\u011b i Milo\u0161. Poji\u0161\u0165ovna argumentovala t\u00edm, \u017ee nejsou prok\u00e1zan\u00e9 \u00fa\u010dinky. <\/p>\n\n\n\n Vladim\u00edr Hou\u0161ka, p\u0159edseda pacientsk\u00e9 organizace Frieda<\/strong> To je jako t\u011b\u017ek\u00e9, proto\u017ee v\u011bt\u0161ina onemocn\u011bn\u00ed opravdu t\u00edm, \u017ee jsou vz\u00e1cn\u00fd, tak jsou v minoritn\u00edch \u010d\u00edslech. Pacient\u016f na sv\u011bt\u011b je m\u00e1lo. T\u00edm p\u00e1dem dat je m\u00e1lo. <\/p>\n\n\n\n Martin Vyhn\u00e1lek, neurolog, Neurologick\u00e1 klinika dosp\u011bl\u00fdch 2. LF UK a FN Motol v Praze<\/strong> Co bylo jednozna\u010dn\u011b prok\u00e1z\u00e1no je, \u017ee l\u00e9k je \u00fa\u010dinn\u00fd. To, co se nev\u00ed, jestli l\u00e9k bude \u00fa\u010dinn\u00fd stejn\u011b i po 5 po 10 letech. <\/p>\n\n\n\n Monika Ber\u00e1nkov\u00e1, redaktorka<\/strong> Milo\u0161 se nevzdal a podal odvol\u00e1n\u00ed. Soud mu dal zapravdu, ale vyhr\u00e1no je\u0161t\u011b nem\u00e1. Moment\u00e1ln\u011b \u010dek\u00e1 na rozhodnut\u00ed poji\u0161\u0165ovny. <\/p>\n\n\n\n CNN Prima News<\/p>\n","protected":false},"excerpt":{"rendered":" Prima Friedreichova ataxie je z\u00e1va\u017en\u00e1 d\u011bdi\u010dn\u00e1 nemoc, kter\u00e1 se projevuje postupn\u00fdm ochabov\u00e1n\u00edm svalstva. Pacient pak kon\u010d\u00ed na invalidn\u00edm voz\u00edku. Ned\u00e1 se vyl\u00e9\u010dit, ale existuje l\u00e9k, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1308,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-61090","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61090","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=61090"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61090\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/1308"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=61090"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=61090"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=61090"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}