Miroslav Urban (61) dost\u00e1v\u00e1 od \u017eivota r\u00e1nu za ranou. P\u0159esto bojuje. Dva roky se l\u00e9\u010dil na Parkinsonovu chorobu, neust\u00e1l\u00e9 zhor\u0161ov\u00e1n\u00ed zdravotn\u00edho stavu nakonec vedlo k je\u0161t\u011b krut\u011bj\u0161\u00ed diagn\u00f3ze: vz\u00e1cn\u00e1 forma ALS (amyotrofick\u00e1 later\u00e1ln\u00ed skler\u00f3za).<\/p>\n
\n„Tat\u00ednek je ohromn\u011b pozitivn\u00ed \u010dlov\u011bk. P\u0159esto\u017ee tato nemoc kon\u010d\u00ed velmi krut\u011b. Postupn\u00fdm ochrnut\u00edm sval\u016f, a\u017e vypov\u011bd\u00ed slu\u017ebu i pl\u00edce a pacient posti\u017een\u00fd ALS, i kdy\u017e z\u016fst\u00e1v\u00e1 p\u0159i smyslech, se udus\u00ed. Pro v\u0161echny nemocn\u00e9 je takov\u00e1 p\u0159edstava konce samoz\u0159ejm\u011b ohromn\u00fd stres,“ \u0159ekla Pr\u00e1vu dcera Michaela.
\n„T\u00e1ta se ale po\u0159\u00e1d sna\u017e\u00ed pracovat z domova, on-line edituje mapy. Maminka musela odej\u00edt ze zam\u011bstn\u00e1n\u00ed a star\u00e1 se o n\u011bj. Raduj\u00ed se z mali\u010dkost\u00ed. Ale v sou\u010dasnosti u\u017e usedl na voz\u00edk, m\u00e1 probl\u00e9my s d\u00fdch\u00e1n\u00edm a artikulac\u00ed,“ dodala Michaela.
\nPrvn\u00ed p\u0159\u00edznaky toho, \u017ee je n\u011bco \u0161patn\u011b, se u pana Urbana objevily v roce 2012. „Zadrh\u00e1val v \u0159e\u010di. Praktick\u00e1 l\u00e9ka\u0159ka si tehdy myslela, \u017ee to m\u00e1 z toho, \u017ee podnik\u00e1 z domova a m\u00e1lo mluv\u00ed s lidmi. Pak za\u010dal zakop\u00e1vat o pr\u00e1h,“ l\u00ed\u010d\u00ed Michaela.
\n„Po vy\u0161et\u0159en\u00ed magnetickou rezonanc\u00ed p\u0159i\u0161el l\u00e9ka\u0159 s t\u00edm, \u017ee jde s nejv\u011bt\u0161\u00ed pravd\u011bpodobnost\u00ed o Parkinsonovu chorobu. Na tu se tat\u00ednek p\u0159es dva roky l\u00e9\u010dil. Ov\u0161em jeho stav se o to v\u00edc zhor\u0161il. V lednu roku 2015 l\u00e9ka\u0159 diagn\u00f3zu opravil. T\u00e1ta trp\u00ed vz\u00e1cnou formou ALS, kter\u00e1 je obt\u00ed\u017en\u011b odhaliteln\u00e1,“ vypr\u00e1v\u00ed dcera mu\u017ee, kter\u00fd \u017eije nedaleko Litv\u00ednova.
\nB\u011bhem dvou let \u017eivota s takto krutou diagn\u00f3zou panu Urbanovi p\u0159ece jen svitla nad\u011bje.
\n(Pokra\u010dov\u00e1n\u00ed na str. 4) Pomalu ho zab\u00edj\u00ed ALS, ale o \u017eivot bojuje\u2026<\/p>\n
(Pokra\u010dov\u00e1n\u00ed ze str. 1) \u00dalevu na\u0161el v l\u00e9\u010db\u011b kmenov\u00fdmi bu\u0148kami v \u00dastavu experiment\u00e1ln\u00ed medic\u00edny.
\n„Tat\u00ednek se u\u017e \u0161patn\u011b pohyboval, m\u011bl probl\u00e9my s d\u00fdch\u00e1n\u00edm a hlavn\u011b polyk\u00e1n\u00edm. I p\u0159i pit\u00ed se dusil. U\u017e po prvn\u00ed aplikaci za\u010dal polykat perfektn\u011b. Je\u0161t\u011b v\u00edc se mu ulevilo v d\u00fdch\u00e1n\u00ed a pohybu po druh\u00e9 aplikaci kmenov\u00fdch bun\u011bk. Jenom\u017ee t\u0159et\u00ed d\u00e1vky u\u017e se nedo\u010dkal. A asi nedo\u010dk\u00e1, proto\u017ee cel\u00fd projekt pozastavili. To ho zdrtilo,“ popsala otcovo tr\u00e1pen\u00ed dcera.<\/p>\n
Dal\u0161\u00ed l\u00e9\u010dba se nechyst\u00e1<\/p>\n
L\u00e9\u010dba kmenov\u00fdmi bu\u0148kami byla loni zastavena pot\u00e9, co se uk\u00e1zalo, \u017ee sen\u00e1torka za \u010cSSD Eva Sykov\u00e1 a \u0159editelka \u00dastavu experiment\u00e1ln\u00ed medic\u00edny AV \u010cR, respektive instituce, kterou vedla, po\u017eadovala po pacientech za l\u00e9\u010dbu kmenov\u00fdmi bu\u0148kami pen\u00edze. Dle z\u00e1kona se v \u010cesku ov\u0161em mus\u00ed takov\u00e1to experiment\u00e1ln\u00ed l\u00e9\u010dba s neov\u011b\u0159en\u00fdmi v\u00fdsledky aplikovat zdarma. Podle informac\u00ed Pr\u00e1va ov\u0161em n\u011bkte\u0159\u00ed pacienti platili za jednu d\u00e1vku 150 tis\u00edc korun.
\nTo je v\u0161ak podle posti\u017een\u00fdch nemoc\u00ed je\u0161t\u011b p\u0159ijateln\u00e9 proti zahrani\u010d\u00ed, kde stoj\u00ed jedna aplikace kmenov\u00fdch bun\u011bk p\u0159es mili\u00f3n korun.
\nJak redakce zjistila, nov\u00e9 l\u00e9\u010dby se nedo\u010dkaj\u00ed.
\n„Pacient\u016fm s ALS byly kmenov\u00e9 bu\u0148ky pod\u00e1ny v r\u00e1mci klinick\u00e9 studie, jej\u00ed\u017e v\u00fdsledky byly publikov\u00e1ny. L\u00e9\u010debn\u00e1 \u010d\u00e1st t\u00e9to studie ji\u017e byla ukon\u010dena, v\u010detn\u011b n\u00e1boru dal\u0161\u00edch pacient\u016f. Tedy v tuto chv\u00edli Bioinova nevyr\u00e1b\u00ed \u017e\u00e1dn\u00fd l\u00e9\u010div\u00fd p\u0159\u00edpravek na b\u00e1zi kmenov\u00fdch bun\u011bk pro aplikaci pacient\u016fm s ALS,“ sd\u011blil Pr\u00e1vu Petr Rychmach, vedouc\u00ed divize klinick\u00fdch studi\u00ed spole\u010dnosti Bioinova, kter\u00e1 vyv\u00edj\u00ed l\u00e9\u010debn\u00e9 p\u0159\u00edpravky na z\u00e1klad\u011b kmenov\u00fdch bun\u011bk.
\nOdborn\u00edci odhaduj\u00ed, \u017ee v \u010cesku \u017eije okolo sedmi set pacient\u016f, je\u017e postihla tato z\u00e1ke\u0159n\u00e1 nevyl\u00e9\u010diteln\u00e1 choroba.
\nCo pana Urbana \u010dek\u00e1 v p\u0159\u00ed\u0161t\u00edch dnech a m\u011bs\u00edc\u00edch, ani on, ani jeho rodina nev\u011bd\u00ed. L\u00e9ka\u0159 to nikdy p\u0159esn\u011b ne\u0159ekne. ALS m\u00e1 jak\u00e9si t\u0159i cesty v\u00fdvoje. Bu\u010f m\u00e1 nemoc rychl\u00fd pr\u016fb\u011bh (jako nap\u0159\u00edklad u expremi\u00e9ra Stanislava Grosse, pozn. red.) a pacient do dvou let zem\u0159e.
\n„Nebo se roky pravideln\u011b st\u0159\u00eddaj\u00ed obdob\u00ed slab\u0161\u00edch a hor\u0161\u00edch projev\u016f. N\u011bkte\u0159\u00ed pacienti se ov\u0161em t\u011b\u0161\u00ed dlouh\u00e9mu obdob\u00ed, kdy se nemoc dr\u017e\u00ed na \u0159ekn\u011bme p\u0159ijateln\u00e9 \u00farovni a trv\u00e1 dlouho, ne\u017e dojde ke zhor\u0161en\u00ed. Takhle \u017eije 10 let s ALS jedna pan\u00ed ze severu \u010cech,“ tlumo\u010dila vyhl\u00eddky nemocn\u00fdch Michaela.
\nTe\u010f, kdy\u017e se tat\u00ednk\u016fv stav zhor\u0161il a byl upout\u00e1n na voz\u00edk, by mu cht\u011bla dcera pomoci, aby neztratil kontakt se sv\u011btem, s lidmi a d\u00e1l mezi n\u011b chodil \u010di jezdil.<\/p>\n
Pomohou lid\u00e9?<\/p>\n
„Elektrick\u00fd voz\u00edk m\u00e1 zhruba 100 kilogram\u016f. Bez speci\u00e1ln\u011b upraven\u00e9ho auta pro voz\u00ed\u010dk\u00e1\u0159e se s n\u00edm t\u00e1ta nem\u016f\u017ee nikam vydat. Ani k doktorovi. V\u00edm, \u017ee auto pot\u0159ebuje, ohromn\u011b by mu to uleh\u010dilo b\u011b\u017en\u00e9 dny a vr\u00e1tilo trochu el\u00e1nu,“ \u0159\u00edk\u00e1 Michaela.
\n„Rozhodla jsem se proto zalo\u017eit sb\u00edrku a jeho p\u0159\u00edb\u011bh zve\u0159ejnit, abych t\u0159eba takhle dok\u00e1zala n\u011bjak\u00e9 pen\u00edze na auto sehnat. Mo\u017en\u00e1 je to ta posledn\u00ed v\u011bc, kterou m\u016f\u017eu pro t\u00e1tu ud\u011blat,“ sv\u011b\u0159ila Pr\u00e1vu svou motivaci dcera pacienta s ALS.<\/p>\n
\u010c\u00edslo transparentn\u00edho \u00fa\u010dtu: 2801133056\/2010<\/p>\n
St\u00e1\u0148a Se\u010fov\u00e1
\nPr\u00e1vo<\/p>\n","protected":false},"excerpt":{"rendered":"
Miroslav Urban (61) dost\u00e1v\u00e1 od \u017eivota r\u00e1nu za ranou. P\u0159esto bojuje. Dva roky se l\u00e9\u010dil na Parkinsonovu chorobu, neust\u00e1l\u00e9 zhor\u0161ov\u00e1n\u00ed zdravotn\u00edho stavu nakonec vedlo k […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-27000","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27000","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=27000"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27000\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27000"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27000"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27000"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}