{"id":22362,"date":"2015-08-12T09:51:29","date_gmt":"2015-08-12T07:51:29","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=22362"},"modified":"2015-08-12T09:51:29","modified_gmt":"2015-08-12T07:51:29","slug":"tabor-hemofiliku-hraji-si-a-uci-se-zvladat-nemoc","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=22362","title":{"rendered":"T\u00e1bor hemofilik\u016f: hraj\u00ed si a u\u010d\u00ed se zvl\u00e1dat nemoc"},"content":{"rendered":"<p><strong>Rozd\u00edl od zdrav\u00e9ho d\u00edt\u011bte nepozn\u00e1te. Hemofilici ale maj\u00ed probl\u00e9m se sr\u00e1\u017elivost\u00ed krve. Letn\u00ed t\u00e1bor jim i rodi\u010d\u016fm pom\u00e1h\u00e1 s teori\u00ed i prax\u00ed<\/strong> <!--more--><\/p>\n<p>B\u011ble\u010d nad Orlic\u00ed \u2013 \u0160estn\u00e1ct d\u011bt\u00ed i s jejich rodi\u010di si u\u017e\u00edv\u00e1 her, ale i rehabilitace na t\u00e1bo\u0159e v B\u011bl\u010di nad Orlic\u00ed. P\u0159ed\u0161koln\u00ed d\u011bti i dosp\u011bl\u00ed se zde u\u010d\u00ed, jak zvl\u00e1dat hemofilii v rodin\u011b.<\/p>\n<p>Po\u0161kozen\u00ed kloub\u016f hroz\u00ed i p\u0159i b\u011b\u017en\u00e9m p\u00e1du, proto m\u00e1 mal\u00fd Tom\u00e1\u0161 na kolenou chr\u00e1ni\u010de. B\u011b\u017en\u011b ale jezd\u00ed na kole a hraje si jako jeho zdrav\u00ed vrstevn\u00edci. &#8222;M\u00e1me dva syny. Mlad\u0161\u00ed je hemofilik. Sna\u017e\u00edme se chovat tak, abychom minimalizovali nebezpe\u010d\u00ed, ale omezen\u00ed nebyla \u017e\u00e1dn\u00e1. Ty samoz\u0159ejm\u011b jsou. Na t\u00e1bo\u0159e se u\u010d\u00edme spole\u010dn\u011b aplikovat injekce, kter\u00e9 jsou pro syna d\u016fle\u017eit\u00e9,&#8220; uvedl Jarom\u00edr Vesel\u00e1k z Plzn\u011b.<\/p>\n<p>Proto ka\u017edoro\u010dn\u011b \u010cesk\u00fd svaz hemofilik\u016f a sdru\u017een\u00ed Hemojunior po\u0159\u00e1d\u00e1 ji\u017e tradi\u010dn\u00ed letn\u00ed t\u00e1bory, kde se d\u011bti krom\u011b n\u00e1cviku aplikace pot\u0159ebn\u00e9 l\u00e9\u010dby v\u011bnuj\u00ed tak\u00e9 obvykl\u00e9mu t\u00e1borov\u00e9mu \u017eivotu. Poprv\u00e9 se do B\u011bl\u010de d\u011bti sjely v roce 2001.<\/p>\n<p>&#8222;Rodi\u010de se u\u010d\u00ed aplikovat, v\u011bnujeme se rehabilitaci a na ka\u017ed\u00e9m t\u00e1bo\u0159e by m\u011bla b\u00fdt hra. Letos m\u00e1me indi\u00e1nsk\u00e9 l\u00e9to, d\u011bti na konci najdou poklad,&#8220; vysv\u011btlila Silvie Bere\u0148ov\u00e1, kter\u00e1 vede t\u00e1borovou hru.<\/p>\n<p>Pro rodi\u010de je d\u016fle\u017eit\u00e9 z\u016fstat v dobr\u00e9 psychick\u00e9 kondici. &#8222;Sna\u017e\u00edme se jim pom\u00e1hat, aby \u017eivot s hemofiliky zvl\u00e1dli. Ukazujeme jim, \u017ee se nen\u00ed \u010deho b\u00e1t,&#8220; dodala Bere\u0148ov\u00e1.<\/p>\n<p>U\u010d\u00ed je aplikovat d\u016fle\u017eit\u00e9 injekce<\/p>\n<p>Zdravotn\u00ed p\u00e9\u010di garantuj\u00ed na t\u00e1bo\u0159e odborn\u00ed hematologov\u00e9, zdravotn\u00ed sestry a fyzioterapeutky, kte\u0159\u00ed ka\u017ed\u00e9mu d\u00edt\u011bti v\u011bnuj\u00ed individu\u00e1ln\u00ed p\u00e9\u010di podle jeho pot\u0159eb a z\u00e1va\u017enosti posti\u017een\u00ed. Ned\u00edlnou sou\u010d\u00e1st\u00ed p\u00e9\u010de je t\u00e9\u017e individu\u00e1ln\u00ed a skupinov\u00e1 fyzioterapie (cvi\u010den\u00ed v baz\u00e9nu a na m\u00ed\u010d\u00edch), kter\u00e1 umo\u017en\u00ed p\u0159edej\u00edt pohybov\u00fdm komplikac\u00edm do budoucna.<\/p>\n<p>&#8222;Snaha modern\u00ed medic\u00edny, je p\u0159esunout l\u00e9\u010dbu hemofilie do dom\u00e1c\u00edho prost\u0159ed\u00ed. Hemofilici se pot\u0159ebuj\u00ed nau\u010dit injekci \u0159edit, aplikovat a zvl\u00e1dnout b\u011b\u017en\u00e9 nekomplikovan\u00e9 akutn\u00ed krv\u00e1cen\u00ed \u010di preventivn\u00ed l\u00e9\u010dbu doma tak, aby nemuseli s ka\u017ed\u00fdm drobn\u00fdm probl\u00e9mem \u010di pot\u0159ebou \u017eiln\u00ed aplikace jezdit do nemocnice. U mal\u00fdch d\u011bt\u00ed je pot\u0159eba zau\u010dit v aplikac\u00edch rodi\u010de, od p\u011bti \u0161esti let jsou ji\u017e d\u011bti schopn\u00e9 si pod dozorem p\u00edchat injekce samy. S d\u011btmi, kter\u00e9 jsou u\u017e zku\u0161en\u011bj\u0161\u00ed a bez probl\u00e9m\u016f zvl\u00e1daj\u00ed aplikace sami, dola\u010fujeme na t\u00e1borech drobnosti. D\u011bti, kter\u00e9 to je\u0161t\u011b neum\u00ed, maj\u00ed na t\u00e1borech \u2013 rekondi\u010dn\u00edch pobytech \u2013 dostatek prostoru, \u010dasu, p\u0159\u00edle\u017eitosti, rad zku\u0161en\u00e9ho person\u00e1lu a motivace &#8222;p\u0159eci nejsem takov\u00fd srab, abych to taky nedal&#8220;, aby aplikace \u017eivotn\u011b d\u016fle\u017eit\u00fdch l\u00e9k\u016f tak\u00e9 zvl\u00e1dly,&#8220; dodala Veronika \u010cepel\u00e1kov\u00e1, hlavn\u00ed vedouc\u00ed t\u00e1bora.<\/p>\n<p>&#8212;<\/p>\n<p>Co je hemofilie?<\/p>\n<p>Geneticky vrozen\u00e1 nemoc pat\u0159\u00edc\u00ed mezi poruchy sr\u00e1\u017elivosti krve. Typicky se projevuje spont\u00e1nn\u00edm krv\u00e1cen\u00edm p\u0159edev\u0161\u00edm do kloub\u016f, ale tak\u00e9 sval\u016f a dal\u0161\u00edch org\u00e1n\u016f. Vznik\u00e1 p\u0159\u00edtomnost\u00ed po\u0161kozen\u00e9ho genu na chromozomu X, choroba se tedy pln\u011b projevuje pouze u mu\u017e\u016f. Podstatou nemoci je nedostate\u010dn\u00e1 tvorba nebo celkov\u00e1 nefunk\u010dnost jednoho z protein\u016f krevn\u00ed plazmy, kter\u00fd je zapojen do procesu sr\u00e1\u017een\u00ed krve. V \u010cesk\u00e9 republice \u017eije kolem 1000 hemofilik\u016f, z nich\u017e p\u0159ibli\u017en\u011b 230 je ve v\u011bku do 18 let.<\/p>\n<p>JAN PRU\u0160KA<br \/>\nHradeck\u00fd den\u00edk<br \/>\n<a href=\"http:\/\/hradecky.denik.cz\/\">http:\/\/hradecky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Rozd\u00edl od zdrav\u00e9ho d\u00edt\u011bte nepozn\u00e1te. Hemofilici ale maj\u00ed probl\u00e9m se sr\u00e1\u017elivost\u00ed krve. Letn\u00ed t\u00e1bor jim i rodi\u010d\u016fm pom\u00e1h\u00e1 s teori\u00ed i prax\u00ed<\/p>\n<\/div>","protected":false},"author":1,"featured_media":14944,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-22362","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\/22362","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=22362"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22362\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14944"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22362"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22362"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22362"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}