{"id":45763,"date":"2024-02-06T11:58:53","date_gmt":"2024-02-06T10:58:53","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=45763"},"modified":"2024-02-06T11:58:53","modified_gmt":"2024-02-06T10:58:53","slug":"hemofilie-mi-vic-dala-nez-vzala-rika-daniel","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=45763","title":{"rendered":"Hemofilie mi v\u00edc dala, ne\u017e vzala, \u0159\u00edk\u00e1 Daniel"},"content":{"rendered":"\n

Se \u0161patnou sr\u00e1\u017elivost\u00ed krve bojuje cel\u00fd \u017eivot<\/em><\/p>\n\n\n\n

Kdy\u017e se Daniel (23) narodil, nic nenasv\u011bd\u010dovalo tomu, \u017ee by trp\u011bl vz\u00e1cnou nemoc\u00ed. Jakmile se ale za\u010dal v\u00a0post\u00fdlce v\u00edc h\u00fdbat a nar\u00e1\u017eet do jej\u00edch bok\u016f, za\u010daly se mu na t\u011ble objevovat mod\u0159iny. \u201eRodi\u010de se proto obr\u00e1tili na l\u00e9ka\u0159e, kte\u0159\u00ed zjistili, \u017ee m\u00e1m hemofilii. Vysv\u011btlili jim, \u017ee se jedn\u00e1 o genetick\u00e9 onemocn\u011bn\u00ed projevuj\u00edc\u00ed se poruchou sr\u00e1\u017elivosti krve \u2013 proto bylo na m\u00e9m t\u011ble tolik mod\u0159in,\u201c<\/em> popisuje Daniel, kter\u00fd v\u00a0sou\u010dasn\u00e9 dob\u011b \u017eije v Praze. L\u00e9ka\u0159i mu okam\u017eit\u011b nasadili tzv. profylaktickou l\u00e9\u010dbu, p\u0159i n\u00ed\u017e se pravideln\u011b aplikuje chyb\u011bj\u00edc\u00ed koncentr\u00e1t sr\u00e1\u017eec\u00edho faktoru p\u0159\u00edmo do krve.<\/p>\n\n\n\n

\u201eInjekce mi museli p\u00edchat ka\u017ed\u00e9 t\u0159i dny. Moje d\u011btsk\u00e1 l\u00e9ka\u0159ka na\u0161t\u011bst\u00ed bydlela bl\u00edzko na\u0161eho domu a s\u00a0nitro\u017eiln\u00ed aplikac\u00ed n\u00e1m pom\u00e1hala. Nejprve v\u0161e prov\u00e1d\u011bla ona, pozd\u011bji u\u017e to ale rodi\u010de zvl\u00e1dli sami,\u201c<\/em> p\u0159ibli\u017euje Daniel. Profylaktick\u00e1 l\u00e9\u010dba ho chr\u00e1nila p\u0159ed krv\u00e1cen\u00edm a komplikacemi, kter\u00e9 jsou s\u00a0n\u00edm spojen\u00e9 a mohou zp\u016fsobit i trval\u00e9 po\u0161kozen\u00ed kloub\u016f. L\u00e9ka\u0159i v\u00a0t\u00e9 dob\u011b tak\u00e9 za\u010dali p\u00e1trat po p\u0159\u00ed\u010din\u011b Danielovy nemoci, tato genetick\u00e1 porucha se toti\u017e v\u00a0jeho rodin\u011b nikdy p\u0159edt\u00edm neobjevila. Zjistili, \u017ee p\u0159ena\u0161e\u010dkou hemofilie je Danielova maminka. \u201eRodi\u010de v\u0161e p\u0159ijali jako fakt, s\u00a0n\u00edm\u017e se mus\u00edme nau\u010dit v\u0161ichni \u017e\u00edt. Byli na m\u011b hodn\u011b opatrn\u00ed, maminka mi nap\u0159\u00edklad v\u0161\u00edvala do kalhot na kolena molitany, aby tlumily p\u0159\u00edpadn\u00fd p\u00e1d. Hodn\u011b starostliv\u00e9 byly i moje babi\u010dky. Sna\u017eili jsme se ale fungovat norm\u00e1ln\u011b, za co\u017e jsem cel\u00e9 rodin\u011b moc vd\u011b\u010dn\u00fd,\u201c<\/em> \u0159\u00edk\u00e1 Daniel.<\/p>\n\n\n\n

D\u00edky opatrnosti a pravideln\u00e9 l\u00e9\u010db\u011b se da\u0159ilo dr\u017eet Danielovu nemoc pod kontrolou. \u201eV d\u011btstv\u00ed jsem nem\u011bl t\u00e9m\u011b\u0159 \u017e\u00e1dn\u00e9 obt\u00ed\u017ee, krom\u011b n\u011bkolika v\u011bt\u0161\u00edch krv\u00e1cen\u00ed do kloub\u016f, co\u017e se u hemofilie st\u00e1v\u00e1. M\u011bl jsem nav\u00edc v\u017edy \u0161t\u011bst\u00ed na skv\u011bl\u00e9 l\u00e9ka\u0159e. Z Humpolce, kde jsme bydleli, jsem nejd\u0159\u00edv jezdil na kontroly do Prahy. V osmi letech si m\u011b pak p\u0159ebrali do p\u00e9\u010de hematologov\u00e9 v Brn\u011b,\u201c<\/em> vzpom\u00edn\u00e1 Daniel. N\u011bkter\u00fdm aktivit\u00e1m se ale musel vyh\u00fdbat \u2013 nap\u0159\u00edklad ly\u017eov\u00e1n\u00ed a bruslen\u00ed. I minim\u00e1ln\u00ed \u00faraz toti\u017e u n\u011bj mohl vyvolat nezvykle dlouh\u00e9 krv\u00e1cen\u00ed. Rodi\u010de v\u0161ak hledali jin\u00e9, bezpe\u010dn\u011bj\u0161\u00ed alternativy a navzdory nemoci podporovali Daniela ve sportov\u00e1n\u00ed. \u201eZ\u00e1vodn\u011b jsem plaval a s rodi\u010di jsme jezdili na kole. Na z\u00e1kladn\u00ed \u0161kole jsem m\u011bl asistentku na t\u011blocvik, kter\u00e1 pro m\u011b p\u0159ipravovala jin\u00fd program, ne\u017e m\u011bli ostatn\u00ed. Nemohl jsem nap\u0159\u00edklad s kluky hr\u00e1t fotbal. Na gymn\u00e1ziu u\u017e jsem si ale v\u0161e hl\u00eddal s\u00e1m,\u201c<\/em> popisuje Daniel.<\/p>\n\n\n\n

Boj s nemoc\u00ed mu usnadnila i organizace Hemojunior<\/a>, kter\u00e1 aktivn\u011b pom\u00e1h\u00e1 d\u011btem s hemofili\u00ed. Rodi\u010de zde nalezli podporu, kdy\u017e byl mal\u00fd. Daniel se d\u00edky n\u00ed sezn\u00e1mil s ostatn\u00edmi vrstevn\u00edky, kte\u0159\u00ed se s touto nemoc\u00ed pot\u00fdkaj\u00ed. \u201eHemofilii maj\u00ed t\u00e9m\u011b\u0159 v\u017edy kluci. Spoustu jsem jich poznal na t\u00e1borech, kter\u00e9 po\u0159\u00e1dal <\/em>\u010cesk\u00fd svaz hemofilik\u016f<\/em><\/a>. Jezd\u00edm na n\u011b dodnes, te\u010f u\u017e ale jako vedouc\u00ed,\u201c<\/em> p\u0159ibli\u017euje Daniel. S\u00e1m se s hemofili\u00ed v d\u011btstv\u00ed vyrovnal relativn\u011b rychle, na t\u00e1borech ale poznal \u0159adu hemofilik\u016f, kte\u0159\u00ed se s touto nemoc\u00ed tak lehce nesm\u00ed\u0159ili. \u201eN\u011bkter\u00fdm d\u011btem to trv\u00e1 del\u0161\u00ed dobu. Spole\u010dn\u00e9 t\u00e1bory jim v tom hodn\u011b pom\u00e1haj\u00ed,\u201c<\/em> vysv\u011btluje Daniel.<\/p>\n\n\n\n

Hemofilie z jeho \u017eivota nikdy nezmiz\u00ed, st\u00e1le podstupuje profylaktickou l\u00e9\u010dbu a t\u0159ikr\u00e1t ro\u010dn\u011b jezd\u00ed na pravideln\u00e9 kontroly do nemocnice. \u201ePokud m\u00e1m n\u011bjak\u00fd probl\u00e9m, mohu ho konzultovat s l\u00e9ka\u0159i i po telefonu, jsou velmi vst\u0159\u00edcn\u00ed,\u201c<\/em> dopl\u0148uje Daniel, kter\u00fd v sou\u010dasn\u00e9 dob\u011b studuje \u010dtvrt\u00fdm rokem matematiku na Univerzit\u011b Karlov\u011b v Praze. Krom\u011b n\u00e1ro\u010dn\u00e9ho studia te\u010f p\u0159ed n\u00edm stoj\u00ed je\u0161t\u011b jedna nov\u00e1 v\u00fdzva. V \u010dervenci se pokus\u00ed zdolat Mont Blanc, nejvy\u0161\u0161\u00ed horu Evropy \u2013 spole\u010dn\u011b s dal\u0161\u00edmi osmi hemofiliky z cel\u00e9ho sv\u011bta. \u201eVybrali m\u011b jako z\u00e1stupce \u010cesk\u00e9ho svazu hemofilik\u016f, s n\u00edm\u017e u\u017e del\u0161\u00ed dobu spolupracuji. Je to pro m\u011b obrovsk\u00e1 v\u00fdzva, a i kdy\u017e hory nejsou m\u016fj nejv\u011bt\u0161\u00ed kon\u00ed\u010dek, nemohl jsem tuto nab\u00eddku odm\u00edtnout,\u201c<\/em> usm\u00edv\u00e1 se Daniel. C\u00edlem expedice je podpora mezin\u00e1rodn\u00edho projektu Save One Life<\/a>, kter\u00fd pom\u00e1h\u00e1 pacient\u016fm s hemofili\u00ed v m\u00e9n\u011b rozvinut\u00fdch st\u00e1tech. I to byl d\u016fvod, pro\u010d Daniel s \u00fa\u010dast\u00ed nev\u00e1hal. Aby se ale expedice mohl z\u00fa\u010dastnit, mus\u00ed se mu poda\u0159it do \u010dervence vybrat 4 000 eur, kter\u00e9 poputuj\u00ed p\u0159\u00edmo k nemocn\u00fdm na \u00fahradu jejich l\u00e9\u010dby. \u201eNa\u0161e cesta nen\u00ed dobrodru\u017estv\u00edm n\u011bkolika \u0161\u0165astlivc\u016f. Je to projekt, kter\u00fd ovlivn\u00ed \u017eivoty lid\u00ed po cel\u00e9m sv\u011bt\u011b. A j\u00e1 jsem moc r\u00e1d, \u017ee mohu b\u00fdt jeho sou\u010d\u00e1st\u00ed,\u201c<\/em> uzav\u00edr\u00e1 Daniel.<\/p>\n\n\n\n

Kdo chce Daniela v jeho \u00fasil\u00ed podpo\u0159it, m\u016f\u017ee poslat p\u0159\u00edsp\u011bvek na \u00fa\u010det \u010cesk\u00e9ho svazu hemofilik\u016f, \u010d. \u00fa. 2109200873\/2700, a do zpr\u00e1vy napsat Mont Blanc. P\u0159\u00edsp\u011bvky se daj\u00ed zaslat i pomoc\u00ed QR k\u00f3du, kter\u00fd je k dispozici ZDE.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Se \u0161patnou sr\u00e1\u017elivost\u00ed krve bojuje cel\u00fd \u017eivot Kdy\u017e se Daniel (23) narodil, nic nenasv\u011bd\u010dovalo tomu, \u017ee by trp\u011bl vz\u00e1cnou nemoc\u00ed. Jakmile se ale za\u010dal v\u00a0post\u00fdlce […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":27915,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-45763","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\/45763","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=45763"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/45763\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/27915"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=45763"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=45763"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=45763"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}