Rann\u00ed ztuhlost, bolesti, otoky a omezen\u00e1 hybnost kloub\u016f. To v\u0161echno jsou p\u0159\u00edznaky juveniln\u00ed idiopatick\u00e9 artritidy \u2013 nejb\u011b\u017en\u011bj\u0161\u00edho typu revmatick\u00e9ho onemocn\u011bn\u00ed u d\u011bt\u00ed a dosp\u00edvaj\u00edc\u00edch. V \u010cesku trp\u00ed touto nevyl\u00e9\u010ditelnou autoimunitn\u00ed chorobou pohybov\u00e9ho apar\u00e1tu stovky mal\u00fdch pacient\u016f. Krom\u011b l\u00e9ka\u0159sk\u00e9 p\u00e9\u010de je pro n\u011b d\u016fle\u017eit\u00e1 i psychick\u00e1 podpora. <\/p>\n\n\n\n
Spolek Revma Liga \u010cR se proto rozhodl pomoci t\u011bm nejmen\u0161\u00edm hravou a z\u00e1bavnou formou a vydal pro n\u011b audioknihu s n\u00e1zvem \u017dirafa Am\u00e1lka. Ta d\u011btem vysv\u011btluje, jak se nemoci p\u0159estat b\u00e1t a \u017ee na ni nejsou sami.<\/p>\n\n\n\n
\u201eTi\u0161t\u011bn\u00e1 verze vznikla u\u017e v roce 2020 a doposud ud\u011blala radost des\u00edtk\u00e1m d\u011bt\u00ed. \u0158ad\u011b z nich ale jejich zdravotn\u00ed stav neumo\u017e\u0148uje dr\u017eet knihu v rukou, proto jsme se rozhodli Am\u00e1l\u010din p\u0159\u00edb\u011bh posunout d\u00e1l a profesion\u00e1ln\u011b ho nahr\u00e1t. Nemocn\u00e9 d\u011bti si tak mohou knihu poslechnout kdykoli samy,\u201c \u0159\u00edk\u00e1 David K\u0159\u00ed\u017e, koordin\u00e1tor projekt\u016f spolku Revma Liga \u010cR. \u017dirafa Am\u00e1lka d\u011btem vysv\u011btluje, jak\u00fdm zp\u016fsobem onemocn\u011bla, jak si s revmatem dok\u00e1\u017ee poradit a co nemoc obn\u00e1\u0161\u00ed. Ty nejmen\u0161\u00ed se nav\u00edc sna\u017e\u00ed p\u0159im\u011bt ke spolupr\u00e1ci v l\u00e9\u010db\u011b, co\u017e pro n\u011b v jejich v\u011bku nen\u00ed v\u017edy snadn\u00e9. <\/p>\n\n\n\n
\u201eRevma nen\u00ed jenom nemoc st\u00e1\u0159\u00ed. V\u011bt\u0161ina rodin si to ale uv\u011bdom\u00ed a\u017e tehdy, kdy\u017e se s t\u00edmto onemocn\u011bn\u00edm setk\u00e1 u sv\u00fdch d\u011bt\u00ed. Mnoh\u00e9 z nich maj\u00ed teprve 3 nebo 4 roky a v\u016fbec nech\u00e1pou, co se s nimi d\u011bje. Proto je velmi d\u016fle\u017eit\u00e9 pracovat s nemocn\u00fdmi d\u011btmi jak po str\u00e1nce fyzick\u00e9, tak psychick\u00e9. J\u00e1 s\u00e1m se s touto nemoc\u00ed pot\u00fdk\u00e1m od sv\u00fdch 12 let, tak\u017ee v\u00edm, o jak velkou z\u00e1t\u011b\u017e se pro celou rodinu jedn\u00e1,\u201c dopl\u0148uje K\u0159\u00ed\u017e.
Juveniln\u00ed idiopatick\u00e1 artritida postihuje 1\u20132 d\u011bti z 1 000. L\u00e9\u010dba t\u00e9to z\u00e1n\u011btliv\u00e9 autoimunitn\u00ed choroby se li\u0161\u00ed podle typu onemocn\u011bn\u00ed a odv\u00edj\u00ed se p\u0159edev\u0161\u00edm od po\u010dtu a lokality posti\u017een\u00fdch kloub\u016f. Z\u00e1n\u011btem posti\u017een\u00e9 klouby se o\u0161et\u0159uj\u00ed lok\u00e1ln\u00ed aplikac\u00ed kortikoid\u016f p\u0159\u00edmo do kloub\u016f, v p\u0159\u00edpad\u011b \u010detn\u011bj\u0161\u00edho posti\u017een\u00ed je zapot\u0159eb\u00ed celkov\u00e1 l\u00e9\u010dba. V terapii se vyu\u017e\u00edv\u00e1 i biologick\u00e1 l\u00e9\u010dba. \u201eNa\u0161t\u011bst\u00ed existuj\u00ed l\u00e9ky, kter\u00e9 nemocn\u00fdm d\u011btem umo\u017e\u0148uj\u00ed v\u00e9st kvalitn\u00ed a plnohodnotn\u00fd \u017eivot. U n\u011bkter\u00fdch z nich se dokonce poda\u0159\u00ed dostat nemoc trvale do klidov\u00e9ho stadia \u2013 tzv. ji uspat. D\u011btem tak n\u011bkdy m\u016f\u017eeme l\u00e9ky i zcela vysadit,\u201c up\u0159es\u0148uje MUDr. \u0160\u00e1rka Fingerhutov\u00e1 z Kliniky pediatrie a d\u011bdi\u010dn\u00fdch poruch metabolismu 1. LF UK a VFN v Praze. Jak ale dod\u00e1v\u00e1, pro mal\u00e9 d\u011bti a jejich rodiny nen\u00ed jednoduch\u00e9 se s nemoc\u00ed vyrovnat. Aktivitu spolku Revma Liga \u010cR proto velmi v\u00edt\u00e1. \u201eJe \u00fa\u017easn\u00e9, \u017ee kniha o \u017eiraf\u011b Am\u00e1lce vznikla a je te\u010f tak\u00e9 namluven\u00e1. Je hodn\u011b d\u016fle\u017eit\u00e1 nejenom pro d\u011bti, ale i pro jejich rodi\u010de, kte\u0159\u00ed touto cestou zjist\u00ed, \u017ee podobn\u00e9 probl\u00e9my \u0159e\u0161\u00ed tak\u00e9 n\u011bkdo jin\u00fd a nejsou v tom sami,\u201c dod\u00e1v\u00e1 MUDr. Fingerhutov\u00e1.
<\/p>\n\n\n\n
Am\u00e1l\u010din p\u0159\u00edb\u011bh namluvil herec Jan Zadra\u017eil. Sou\u010d\u00e1st\u00ed audioknihy je p\u00edsni\u010dka, kterou nazp\u00edvala jeho dcera Julie. \u201eRodi\u010de si knihu mohou zdarma st\u00e1hnout na na\u0161ich webov\u00fdch str\u00e1nk\u00e1ch a pou\u0161t\u011bt ji sv\u00fdm nemocn\u00fdm d\u011btem t\u0159eba jako poh\u00e1dku p\u0159ed span\u00edm. P\u0159\u00edb\u011bh na\u0161\u00ed \u017eirafky m\u00e1 na ty nejmen\u0161\u00ed p\u016fsobit motiva\u010dn\u011b \u2013 d\u00edky Am\u00e1lce d\u011bti pochop\u00ed, \u017ee svou nemoc dok\u00e1\u017eou zvl\u00e1dnout a mohou \u017e\u00edt stejn\u011b jako jejich vrstevn\u00edci,\u201c dopl\u0148uje K\u0159\u00ed\u017e.
<\/p>\n\n\n\n
Audiokniha \u017dirafa Am\u00e1lka je ke sta\u017een\u00ed nejenom na webov\u00fdch str\u00e1nk\u00e1ch Revma Ligy \u010cR, rodi\u010de s d\u011btmi si ji mohou poslechnout tak\u00e9 na kan\u00e1lu Youtube. Knihu se poda\u0159ilo p\u0159ev\u00e9st do audiopodoby d\u00edky sb\u00edrce Darujme.cz, do n\u00ed\u017e p\u0159isp\u011blo v\u00edce ne\u017e 130 lid\u00ed. O jej\u00ed vznik se zaslou\u017eily i Nadace \u010cEZ a Nadace Vodafone. D\u011bti nemocn\u00e9 s revmatem podporuje spolek Revma Liga \u010cR sv\u00fdmi aktivitami dlouhodob\u011b. \u201eRodiny d\u011bt\u00ed s t\u00edmto onemocn\u011bn\u00edm se u\u017e n\u011bkolik let sdru\u017euj\u00ed v pacientsk\u00e9 skupin\u011b Kloub\u00edci, kterou jsme za t\u00edm \u00fa\u010delem zalo\u017eili. D\u00edky n\u00ed se mohou rodi\u010de a d\u011bti spole\u010dn\u011b potk\u00e1vat, vym\u011b\u0148ovat si zku\u0161enosti a vz\u00e1jemn\u011b si pom\u00e1hat \u2013 nemoc pak zvl\u00e1daj\u00ed mnohem l\u00e9pe,\u201c dod\u00e1v\u00e1 K\u0159\u00ed\u017e.<\/p>\n\n\n\n
Ing. Barbora Mertov\u00e1, mertova@mavepr.cz, +420 737 207 198<\/p>\n","protected":false},"excerpt":{"rendered":"
Rann\u00ed ztuhlost, bolesti, otoky a omezen\u00e1 hybnost kloub\u016f. To v\u0161echno jsou p\u0159\u00edznaky juveniln\u00ed idiopatick\u00e9 artritidy \u2013 nejb\u011b\u017en\u011bj\u0161\u00edho typu revmatick\u00e9ho onemocn\u011bn\u00ed u d\u011bt\u00ed a dosp\u00edvaj\u00edc\u00edch. V […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14683,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17],"tags":[],"class_list":["post-41647","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-kultura"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/41647","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=41647"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/41647\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14683"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=41647"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=41647"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=41647"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}