{"id":37826,"date":"2022-06-28T13:40:36","date_gmt":"2022-06-28T11:40:36","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=37826"},"modified":"2022-06-28T13:40:37","modified_gmt":"2022-06-28T11:40:37","slug":"na-spravnou-diagnozu-cekaji-lide-se-sklerodermii-roky","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=37826","title":{"rendered":"Na spr\u00e1vnou diagn\u00f3zu \u010dekaj\u00ed lid\u00e9 se sklerodermi\u00ed roky"},"content":{"rendered":"\n

Praha, 23. 6. 2022 \u2013 Poporodn\u00ed deprese, lupus, hypochondrie. I tyto diagn\u00f3zy si vyslechli pacienti, ne\u017e u nich l\u00e9ka\u0159i odhalili syst\u00e9movou sklerodermii. Vypl\u00fdv\u00e1 to z\u00a0dotazn\u00edku, kter\u00fd mezi nemocn\u00e9 rozeslala pacientsk\u00e1 skupina <\/strong>Skleroderma Revma Liga \u010cesk\u00e1 republika. T\u00e9m\u011b\u0159 30\u00a0%\u00a0z\u00a0dot\u00e1zan\u00fdch si svoji skute\u010dnou diagn\u00f3zu vyslechlo a\u017e za 10 let od prvn\u00edch p\u0159\u00edznak\u016f nemoci. <\/strong>Roky tak pro\u017eili v\u00a0nejistot\u011b, obav\u00e1ch a mnohdy i v\u00a0bolestech bez \u00fa\u010dinn\u00e9 l\u00e9\u010dby a jejich stav se zhor\u0161oval. Krom\u011b pozdn\u00edho odhalen\u00ed nemoci pacienti tak\u00e9 \u010dasto bojuj\u00ed s\u00a0\u00fa\u0159ady, kter\u00e9 jim necht\u011bj\u00ed p\u0159iznat invalidn\u00ed d\u016fchod. Na tyto probl\u00e9my pacientsk\u00e1 skupina upozor\u0148uje u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne sklerodermie, kter\u00fd p\u0159ipad\u00e1 na 29. \u010dervna.<\/strong><\/p>\n\n\n\n

\u201eZ pr\u016fzkumu mezi na\u0161imi pacienty vypl\u00fdv\u00e1, \u017ee v\u00edce ne\u017e polovina\u00a0dot\u00e1zan\u00fdch \u010dekala na spr\u00e1vnou diagn\u00f3zu odjednoho roku a\u017e po deset let. N\u011bkter\u00fdm z\u00a0nich odm\u00edtali l\u00e9ka\u0159i prov\u00e9st podrobn\u011bj\u0161\u00ed vy\u0161et\u0159en\u00ed nebo je poslat ke specialist\u016fm a p\u0159\u00edznaky p\u0159isuzovali psychick\u00e9 nemoci. Proto se sna\u017e\u00edme o\u00a0nemoci v\u00edce mluvit, aby u\u017e k\u00a0takov\u00fdm p\u0159\u00edpad\u016fm nedoch\u00e1zelo,\u201c<\/em> \u0159\u00edk\u00e1 Michela Linkov\u00e1, vedouc\u00ed pacientsk\u00e9 skupiny Skleroderma Revma Liga \u010cesk\u00e1 republika.<\/p>\n\n\n\n

Pr\u016fzkum mezi t\u0159ic\u00edtkou pacient\u016f tak\u00e9 zji\u0161\u0165oval, do jak\u00e9 m\u00edry jim nemoc zasahuje do osobn\u00edho i\u00a0pracovn\u00edho \u017eivota. V\u00edce ne\u017e 80 % z dot\u00e1zan\u00fdch uvedlo, \u017ee jim nemoc br\u00e1n\u00ed pracovat bez omezen\u00ed.\u00a0 Invalidn\u00ed d\u016fchod 1. stupn\u011b byl v\u0161ak p\u0159izn\u00e1n pouze 40 % z nich, pln\u00fd pak t\u0159etin\u011b dot\u00e1zan\u00fdch. V\u011bt\u0161ina pacient\u016f z\u00e1rove\u0148 uvedla, \u017ee jim p\u0159iznan\u00e1 v\u00fd\u0161e invalidn\u00edho d\u016fchodu nesta\u010d\u00ed a pot\u0159ebovali by jeho nav\u00fd\u0161en\u00ed. S\u00a0p\u0159izn\u00e1n\u00edm invalidn\u00edho d\u016fchodu m\u00e1 \u0161patnou zku\u0161enost i Dana (42) z\u00a0Karlov\u00fdch Var\u016f. \u201e<\/em>V\u00a0pr\u00e1ci jsem manipulovala s\u00a0t\u011b\u017ek\u00fdmi v\u011bcmi v\u00a0pra\u0161n\u00e9m prost\u0159ed\u00ed, co\u017e jsem ve sv\u00e9m stavu d\u011blat nemohla. Nemoc mi zas\u00e1hla klouby, j\u00edcen i pl\u00edce. Z\u00a0l\u00e9k\u016f na bolest jsem vy\u010derpan\u00e1 a jak\u00e1koli sebemen\u0161\u00ed z\u00e1t\u011b\u017e, a\u0165 u\u017e fyzick\u00e1, nebo psychick\u00e1, mi nemoc zhor\u0161\u00ed. N\u011bkolikr\u00e1t jsem se p\u0159ed revizn\u00edm l\u00e9ka\u0159em rozbre\u010dela, proto\u017ee se na m\u011b d\u00edval, jako bych byla zdrav\u00fd \u010dlov\u011bk, a j\u00e1 p\u0159itom byla na pokraji sil,\u201c<\/em> popisuje Dana, kter\u00e9 \u010cesk\u00e1 spr\u00e1va soci\u00e1ln\u00edho zabezpe\u010den\u00ed p\u0159iznala d\u016fchod 1. stupn\u011b a\u017e po \u010dty\u0159ech letech \u017e\u00e1d\u00e1n\u00ed. Dnes je Dana kv\u016fli posti\u017een\u00ed plic v\u00a0pln\u00e9m invalidn\u00edm d\u016fchodu.<\/p>\n\n\n\n

Prvn\u00edm p\u0159\u00edznakem syst\u00e9mov\u00e9 sklerodermie b\u00fdv\u00e1 nej\u010dast\u011bji posti\u017een\u00ed rukou, a to otoky, bolestivost a tzv. Raynaud\u016fv fenom\u00e9n, kter\u00fd podle odborn\u00e9 studie tr\u00e1p\u00ed a\u017e 86 % pacient\u016f. Nemocn\u00fdm se dostate\u010dn\u011b neprokrvuj\u00ed prsty, kter\u00e9 b\u011blaj\u00ed, modraj\u00ed a\u017e fialov\u011bj\u00ed. Jsou citliv\u00e9, bol\u00ed a tuhnou. Krom\u011b c\u00e9v postihuje nemoc tak\u00e9 k\u016f\u017ei, kter\u00e1 tuhne. Pacienti maj\u00ed pocit, \u017ee je jim o \u010d\u00edslo men\u0161\u00ed. V\u00a0n\u011bkter\u00fdch p\u0159\u00edpadech sklerodermie napad\u00e1 tak\u00e9 j\u00edcen, za\u017e\u00edvac\u00ed syst\u00e9m, srdce, ledviny a pl\u00edce. V\u00a0p\u0159\u00edpad\u011b posti\u017een\u00ed plic jsou lid\u00e9 s\u00a0touto nemoc\u00ed \u010d\u00edm d\u00e1l t\u00edm v\u00edc du\u0161n\u00ed. Tuhnut\u00ed tk\u00e1n\u011b plic je proto jedn\u00edm z\u00a0nejz\u00e1va\u017en\u011bj\u0161\u00edch projev\u016f sklerodermie a takov\u00ed pacienti se vedle revmatologick\u00fdch center l\u00e9\u010d\u00edi ve specializovan\u00fdch pneumologick\u00fdch centrech. \u201eV n\u011bkolika p\u0159\u00edpadech jsem se setkal s ne\u010dekan\u011b n\u00edzk\u00fdm stupn\u011bm invalidn\u00edho d\u016fchodu. Pova\u017euji za d\u016fle\u017eit\u00e9, aby nemoc pe\u010dliv\u011b zhodnotil revmatolog. \u0158ada pacient\u016f nem\u016f\u017ee kv\u016fli omezen\u00e9 hybnosti rukou pracovat manu\u00e1ln\u011b ani v\u00a0administrativ\u011b s\u00a0kl\u00e1vesnic\u00ed a my\u0161\u00ed. Nemysliteln\u00e1 je tak\u00e9 pr\u00e1ce v\u00a0zim\u011b. Projevy sklerodermie se nav\u00edc v\u00a0\u010dase zhor\u0161uj\u00ed a nelze o\u010dek\u00e1vat jejich zlep\u0161en\u00ed,\u201c<\/em> \u0159\u00edk\u00e1 doc. MUDr. Tom\u00e1\u0161 Soukup, Ph.D., ze Subkatedry revmatologie II. intern\u00ed gastroenterologick\u00e9 kliniky LF UK a FN Hradec Kr\u00e1lov\u00e9.<\/p>\n\n\n\n

Na pot\u00ed\u017ee, s\u00a0nimi\u017e se pot\u00fdkaj\u00ed, letos upozor\u0148uje pacientsk\u00e1 skupina Skleroderma Revma Liga \u010cesk\u00e1 republika, mimo jin\u00e9 nafocen\u00edm s\u00e9rie um\u011bleck\u00fdch fotografi\u00ed s\u00a0fotografkou Lenkou La\u0148kovou, kter\u00e9 se zam\u011b\u0159uj\u00ed pr\u00e1v\u011b na ruce, posti\u017een\u00e9 nemoc\u00ed.<\/p>\n\n\n\n

O pacientsk\u00e9 skupin\u011b Skleroderma<\/strong><\/p>\n\n\n\n

Pacientsk\u00e1 skupina Skleroderma vznikla roku 2018 a je vedena pod spolkem Revma Liga \u010cesk\u00e1 republika. Skupina sdru\u017euje lidi s\u00a0vz\u00e1cn\u00fdm a z\u00e1va\u017en\u00fdm autoimunitn\u00edm onemocn\u011bn\u00edm zvan\u00fdm syst\u00e9mov\u00e1 sklerodermie. Jejich c\u00edlem je informovat pacienty, l\u00e9ka\u0159e, fyzioterapeuty i \u0161irokou ve\u0159ejnost o\u00a0specifik\u00e1ch tohoto onemocn\u011bn\u00ed a prost\u0159ednictv\u00edm nejr\u016fzn\u011bj\u0161\u00edch aktivit pomoci pacient\u016fm se s n\u00edm co nejl\u00e9pe vyrovnat. Pacienti mohou nap\u0159\u00edklad vyu\u017e\u00edt psychologickou poradnu https:\/\/www.revmaporadna.cz\/<\/a>. Lid\u00e9, kter\u00fdm l\u00e9ka\u0159i sklerodermii odhalili teprve ned\u00e1vno, se mohou 30. \u010dervna z\u00fa\u010dastnit online webin\u00e1\u0159e<\/a> na t\u00e9ma Co by m\u011bl v\u011bd\u011bt nov\u011b diagnostikovan\u00fd pacient<\/em>. Loni si lid\u00e9 se sklerodermi\u00ed p\u0159ipravili tane\u010dn\u00ed video, ve kter\u00e9m ztv\u00e1rnili sv\u00e9 \u00fatrapy i odhodl\u00e1n\u00ed boj s\u00a0nemoc\u00ed nevzd\u00e1vat \u2013 se sloganem Vystihuj\u00ed n\u00e1s na\u0161e v\u00e1\u0161n\u011b, ne na\u0161e nemoc. Letos nafotili s\u00e9rii um\u011bleck\u00fdch fotografi\u00ed s fotografkou Lenkou La\u0148kovou: www.lenkalankova.cz. V\u00edce o pacientsk\u00e9 skupin\u011b Skleroderma na webu (www.revmaliga.cz\/klub\/skleroderma<\/em><\/a>), Facebooku (www.facebook.com\/pacientskaskupina<\/em><\/a>) nebo na Instagramu (www.instagram.com\/skleroderma\/?hl=cs<\/em><\/a>).<\/p>\n\n\n\n

O sklerodermii<\/strong><\/p>\n\n\n\n

Syst\u00e9mov\u00e1 sklerodermie, d\u0159\u00edve tak\u00e9 naz\u00fdvan\u00e1 jako progresivn\u00ed syst\u00e9mov\u00e1 skler\u00f3za, je z\u00e1va\u017en\u00e9 autoimunitn\u00ed onemocn\u011bn\u00ed postihuj\u00edc\u00ed c\u00e9vy, k\u016f\u017ei, tr\u00e1vic\u00ed trakt, vz\u00e1cn\u011b, ale dramaticky tak\u00e9 ledviny a minim\u00e1ln\u011b v\u00a0polovin\u011b p\u0159\u00edpad\u016f i pl\u00edce. Doch\u00e1z\u00ed k nadprodukci kolagenu a tak\u00e9 k vazivovat\u011bn\u00ed a zu\u017eov\u00e1n\u00ed a\u017e zanik\u00e1n\u00ed c\u00e9vek. Takto m\u016f\u017ee b\u00fdt zasa\u017eena nejen k\u016f\u017ee, ale tak\u00e9 vnit\u0159n\u00ed org\u00e1ny. \u010cast\u00e9 b\u00fdv\u00e1 i posti\u017een\u00ed tr\u00e1vic\u00edho traktu, konkr\u00e9tn\u011b j\u00edcnu, projevuj\u00edc\u00ed se p\u00e1len\u00edm \u017e\u00e1hy a probl\u00e9my s polyk\u00e1n\u00edm. Posti\u017een\u00ed k\u016f\u017ee se zpo\u010d\u00e1tku projevuje zejm\u00e9na na rukou, kde doch\u00e1z\u00ed k\u00a0otok\u016fm, tuhnut\u00ed a ztlu\u0161t\u011bn\u00ed k\u016f\u017ee. Poko\u017eka se m\u016f\u017ee jevit jako leskl\u00e1, napjat\u00e1 a tuh\u00e1. Na po\u010d\u00e1tku mohou tyto projevy p\u0159ipom\u00ednat rann\u00ed ztuhlosti p\u0159i artritid\u011b. Postupn\u011b nemoc zasahuje i obli\u010dej, kter\u00fd dost\u00e1v\u00e1 maskovit\u00fd vzhled s\u00a0typick\u00fdm r\u00fdhov\u00e1n\u00edm kolem \u00fast, kter\u00e1 je pro nemocn\u00e9ho n\u011bkdy t\u011b\u017ek\u00e9 otev\u00edrat. P\u0159\u00ed\u010diny onemocn\u011bn\u00ed nejsou zn\u00e1m\u00e9, svou roli ale mohou hr\u00e1t genetick\u00e9 faktory i faktory vn\u011bj\u0161\u00edho prost\u0159ed\u00ed. Ro\u010dn\u011b se odhaduje, \u017ee l\u00e9ka\u0159i v \u010cesk\u00e9 republice objev\u00ed a\u017e 140 nov\u00fdch pacient\u016f.<\/p>\n\n\n\n

Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"

Praha, 23. 6. 2022 \u2013 Poporodn\u00ed deprese, lupus, hypochondrie. I tyto diagn\u00f3zy si vyslechli pacienti, ne\u017e u nich l\u00e9ka\u0159i odhalili syst\u00e9movou sklerodermii. Vypl\u00fdv\u00e1 to z\u00a0dotazn\u00edku, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":37827,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-37826","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\/37826","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=37826"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/37826\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/37827"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=37826"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=37826"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=37826"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}