Kate\u0159ina trp\u00ed z\u00e1va\u017en\u00fdm vrozen\u00fdm onemocn\u011bn\u00edm, kter\u00e9 vy\u017eaduje celo\u017eivotn\u00ed l\u00e9\u010dbu. Kate\u0159in\u011b diagnostikovali Gaucherovu chorobu a\u017e ve \u010dtrn\u00e1cti letech. Do t\u00e9 doby nikdo nev\u011bd\u011bl, pro\u010d je bled\u00e1, huben\u00e1, m\u00e1 vypoukl\u00e9 b\u0159\u00ed\u0161ko a bol\u00ed ji nohy. Jako d\u00edt\u011b tr\u00e1vila ka\u017ed\u00e9 pr\u00e1zdniny v nemocnici.
\n<\/p>\n
„Dost\u00e1vala jsem vitaminy, sna\u017eila jsem se j\u00edst, abych p\u0159ibrala, ale nic nepom\u00e1halo,“ vzpom\u00edn\u00e1 Katka. <\/p>\n
POKUD SE NESTANE Z\u00c1ZRAK, TAK… <\/p>\n
„Chodila jsem jednou za p\u016fl roku na kontroly.
\nPoka\u017ed\u00e9 konstatovali, \u017ee se m\u016fj stav zhor\u0161uje.
\nNec\u00edtila jsem se \u0161patn\u011b, byla jsem na svoji nemoc zvykl\u00e1,“ vysv\u011btluje Katka.
\n„Zato moji rodi\u010de se tr\u00e1pili, necht\u011bli to ale p\u0159ede mnou d\u00e1t najevo. Rozmazlovali m\u011b,“ usm\u00edv\u00e1 se \u017eena, kter\u00e1 u\u017e je sama maminkou desetilet\u00fdch dvoj\u010dat. „Taky je rozmazluju!“ sm\u011bje se. V dob\u011b, kdy na jej\u00ed nemoc neexistovala l\u00e9\u010dba, j\u00ed v\u0161ak do sm\u00edchu nebylo. Ve dvaceti letech za\u017eila \u0161ok, kdy\u017e se dozv\u011bd\u011bla, \u017ee pokud se nestane z\u00e1zrak, m\u016f\u017ee um\u0159\u00edt. <\/p>\n
\u017dIVOTOD\u00c1RN\u00c9 P\u0158EKVAPEN\u00cd <\/p>\n
L\u00e9ka\u0159i napl\u00e1novali operaci, p\u0159i n\u00ed\u017e j\u00ed m\u011bla b\u00fdt odebr\u00e1na nemoc\u00ed posti\u017een\u00e1 slezina. „\u0158ekli mi, \u017ee \u010dasem mi pravd\u011bpodobn\u011b budou muset odoperovat i j\u00e1tra,“ vzpom\u00edn\u00e1 Katka „V nemocnici za mnou nakonec ov\u0161em nep\u0159i\u0161li se skalpelem, ale s prvn\u00ed d\u00e1vkou pro m\u011b \u017eivotod\u00e1rn\u00e9ho l\u00e9ku!“ popisuje s vd\u011b\u010dnost\u00ed Kate\u0159ina. Psal se rok 1997 a ona dostala mo\u017enost nitro\u017eiln\u011b u\u017e\u00edvat pro ni pot\u0159ebn\u00fd enzym.<\/p>\n
Drahou l\u00e9\u010dbu hrad\u00ed poji\u0161\u0165ovna. Katka si zvykla jezdit ka\u017ed\u00fdch \u010dtrn\u00e1ct dn\u00ed do Prahy na infuze. Za dvacet let si z povinnosti ud\u011blala radost: b\u011bhem l\u00e9\u010dby se setk\u00e1v\u00e1 se stejn\u011b nemocn\u00fdmi lidmi \u2013 dnes u\u017e p\u0159\u00e1teli. Spole\u010dn\u011b s n\u011bkolika dal\u0161\u00edmi zalo\u017eila sdru\u017een\u00ed pacient\u016f se st\u0159\u00e1dav\u00fdmi onemocn\u011bn\u00edmi, mezi n\u011b\u017e Gaucherova choroba pat\u0159\u00ed (sdru\u017een\u00ed META, www.sdruzenimeta. cz). <\/p>\n
\u017d\u00cdT SI P\u0158EJU HLAVN\u011a KV\u016eLI D\u011aTEM <\/p>\n
„Za svoji nemoc se nestyd\u00edm,“ \u0159\u00edk\u00e1 Katka. Netajila ji ani p\u0159ed b\u00fdval\u00fdm man\u017eelem \u2013 otcem sv\u00fdch syn\u016f. Byl u zrodu jej\u00ed l\u00e9\u010dby, pro\u017e\u00edval v\u0161echno s n\u00ed. „Vd\u00e1vala jsem se ve t\u0159iadvaceti. Nev\u011bd\u011bli jsme, jestli budeme moci m\u00edt d\u011bti. Moje l\u00e9ka\u0159ka v\u00e1hala, man\u017eel podstupil genetick\u00e9 vy\u0161et\u0159en\u00ed…
\nOsud n\u00e1m dop\u0159\u00e1l hned dva zdrav\u00e9 kluky najednou,“ vypr\u00e1v\u00ed dnes u\u017e rozveden\u00e1 Katka. Se syny o sv\u00e9 nemoci mluv\u00ed, stejn\u011b jako s malou dcerou sv\u00e9ho p\u0159\u00edtele. „Spole\u010dn\u011b se mnou v\u0161ichni sd\u00edlej\u00ed tak\u00e9 radost ze sportu, kter\u00fd je m\u00fdm velk\u00fdm kon\u00ed\u010dkem. Kolo, b\u011bh, plav\u00e1n\u00ed…,“ vypo\u010d\u00edt\u00e1v\u00e1 Katka. „Jen dovolen\u00e9 mus\u00edme pl\u00e1novat s ohledem na infuze. To je snad jedin\u00e9 omezen\u00ed, kter\u00e9 m\u00e1m,“ \u0159\u00edk\u00e1 \u017eena, jej\u00edm\u017e vzorem je jej\u00ed mlad\u0161\u00ed sestra s vrozen\u00fdm posti\u017een\u00edm ruky. „Je pro m\u011b usm\u011bvav\u00fdm d\u016fkazem toho, \u017ee i s handicapem se d\u00e1 \u017e\u00edt.“ * <\/p>\n
* Gaucherova nemoc (\u010dti go\u0161erova) pat\u0159\u00ed mezi vz\u00e1cn\u00e1 st\u0159\u00e1dav\u00e1 onemocn\u011bn\u00ed. Je d\u011bdi\u010dn\u011b podm\u00edn\u011bn\u00e1, p\u0159i poru\u0161e tvroby jednoho z lyzosom\u00e1ln\u00edch enzym\u016f v\u00e1zne zpracov\u00e1n\u00ed slo\u017eit\u00fdch slou\u010denin cukr\u016f a tuk\u016f, kter\u00e9 se hromad\u00ed v bu\u0148k\u00e1ch a ochromuj\u00ed jejich \u010dinnost. St\u0159\u00e1d\u00e1n\u00ed se nejv\u00edce projevuje v kostn\u00ed d\u0159eni, slezin\u011b, j\u00e1trech. * V N\u00e1rodn\u00edm centru pro Gaucherovu chorobu se zab\u00fdvaj\u00ed tak\u00e9 l\u00e9\u010dbou dal\u0161\u00edch vz\u00e1cn\u00fdch metabolick\u00fdch nemoc\u00ed. * \u010cesk\u00e1 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed pom\u00e1h\u00e1 pacient\u016fm i rodin\u00e1m \u2013 kontakt: ww.vzacna-onemocneni.cz. <\/p>\n
Libu\u0161e Ve\u010de\u0159ov\u00e1
\nKatka<\/p>\n","protected":false},"excerpt":{"rendered":"
Kate\u0159ina trp\u00ed z\u00e1va\u017en\u00fdm vrozen\u00fdm onemocn\u011bn\u00edm, kter\u00e9 vy\u017eaduje celo\u017eivotn\u00ed l\u00e9\u010dbu. Kate\u0159in\u011b diagnostikovali Gaucherovu chorobu a\u017e ve \u010dtrn\u00e1cti letech. Do t\u00e9 doby nikdo nev\u011bd\u011bl, pro\u010d je bled\u00e1, […]<\/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-24596","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24596","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=24596"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24596\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24596"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24596"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24596"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}