Praha, 23. 6. 2021 \u2013 \u201eJe to jako kdyby byla na\u0161e k\u016f\u017ee o \u010d\u00edslo men\u0161\u00ed,\u201c popisuj\u00ed pacienti \u017eivot se syst\u00e9movou sklerodermi\u00ed. Autoimunitn\u00ed nemoc postihuje krom\u011b k\u016f\u017ee tak\u00e9 c\u00e9vy, klouby, j\u00edcen a pl\u00edce. S nemocn\u00fdmi pl\u00edcemi se pot\u00fdk\u00e1 a\u017e t\u0159etina pacient\u016f, kte\u0159\u00ed sklerodermi\u00ed trp\u00ed. Jejich plicn\u00ed tk\u00e1\u0148 se jizv\u00ed, pacienti nemohou dostate\u010dn\u011b d\u00fdchat a mohou b\u00fdt ohro\u017eeni na \u017eivot\u011b. Nad\u011bj\u00ed je pro n\u011b antifibrotick\u00e1 l\u00e9\u010dba, kter\u00e1 dok\u00e1\u017ee postup nemoci zpomalit. Na onemocn\u011bn\u00ed upozor\u0148uj\u00ed u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne sklerodermie, kter\u00fd p\u0159ipad\u00e1 na 29. \u010dervna.<\/p>\n\n\n\n
Syst\u00e9mov\u00e1 sklerodermie je nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed, kter\u00fdm v \u010cesku trp\u00ed kolem 1 760 lid\u00ed. \u010casto postihuje \u017eeny v produktivn\u00edm v\u011bku kolem 30 let. Mu\u017e\u016fm se nemoc tak\u00e9 nevyh\u00fdb\u00e1, ale jsou j\u00ed ohro\u017eeni m\u00e9n\u011b, ve srovn\u00e1n\u00ed se \u017eenami onemocn\u00ed 1 : 5. <\/p>\n\n\n\n
\u201eSklerodermii neum\u00edme l\u00e9\u010dit celkov\u011b, zvl\u00e1d\u00e1me ale potla\u010dit r\u016fzn\u00e9 projevy podle toho, jak\u00e9 org\u00e1ny nemoc zas\u00e1hla. Jestli\u017ee nap\u0159\u00edklad postihne pl\u00edce, doch\u00e1z\u00ed u pacienta k tuhnut\u00ed a jizven\u00ed plic. Typick\u00fdmi p\u0159\u00edznaky jsou du\u0161nost, such\u00fd ka\u0161el a \u010dast\u00e9 zad\u00fdch\u00e1v\u00e1n\u00ed,\u201c \u0159\u00edk\u00e1 doc. MUDr. Tom\u00e1\u0161 Soukup, Ph.D., ze Subkatedry revmatologie II. intern\u00ed gastroenterologick\u00e9 kliniky LF UK a FNHradec Kr\u00e1lov\u00e9. Pacient\u016fm se syst\u00e9movou sklerodermi\u00ed a s posti\u017een\u00edm plic v lo\u0148sk\u00e9m rocesvitla nad\u011bje v l\u00e9\u010db\u011b v podob\u011b antifibrotick\u00e9ho l\u00e9ku, kter\u00fd byl registrov\u00e1n i v \u010cesku. Prozat\u00edm je l\u00e9k zdravotn\u00edmi poji\u0161\u0165ovnami schvalov\u00e1n pomoc\u00ed speci\u00e1ln\u00edho \u00a7 16. \u010c\u00edm d\u0159\u00edve pacienti s plicn\u00edm posti\u017een\u00edm l\u00e9\u010dbu dostanou, t\u00edm v\u011bt\u0161\u00ed nad\u011bji na sn\u00ed\u017een\u00ed m\u00edry po\u0161kozen\u00ed plicn\u00ed tk\u00e1n\u011b maj\u00ed.<\/p>\n\n\n\n
Sklerodermie napadla pl\u00edce tak\u00e9 pan\u00ed Ivan\u011b z Prost\u011bjovska. Zad\u00fdch\u00e1v\u00e1n\u00ed a ka\u0161el si ale nejprve s ostatn\u00edmi p\u0159\u00edznaky nemoci, jako je ot\u00e9k\u00e1n\u00ed kloub\u016f nebo fialov\u011bn\u00ed prst\u016f, nespojila. Pr\u00e1v\u011b kv\u016fli komplikac\u00edm s dechem nakonec nastoupila do pln\u00e9ho invalidn\u00edho d\u016fchodu. \u201eMusela jsem si zvyknout i na to, \u017ee ob\u010das vyka\u0161l\u00e1v\u00e1m krev. To je moment, kter\u00fd v\u00e1m podraz\u00ed nohy a po\u0159\u00e1dn\u011b zam\u00e1v\u00e1 s psychikou. Dnes u\u017e si s t\u00edm ale dok\u00e1\u017eu poradit a p\u0159ipravuji na podobnou zku\u0161enost i ostatn\u00ed pacienty,\u201c \u0159\u00edk\u00e1 Ivana. <\/p>\n\n\n\n
Lid\u00e9 trp\u00edc\u00ed sklerodermi\u00ed se \u010dasto pot\u00fdkaj\u00ed s nedostatkem informac\u00ed, jeliko\u017e jde st\u00e1le o vz\u00e1cn\u00e9 onemocn\u011bn\u00ed. Na nevyl\u00e9\u010ditelnou nemoc proto l\u00e9ka\u0159i spole\u010dn\u011b s pacientskou skupinou SklerodermaRevma Liga upozor\u0148uj\u00ed u p\u0159\u00edle\u017eitosti Sv\u011btov\u00e9ho dne sklerodermie, kter\u00fd p\u0159ipad\u00e1 na 29. \u010dervna. \u201eV roce 2015, kdy jsem byla sama diagnostikov\u00e1na, bylo na internetu jen n\u011bkolik dostupn\u00fdch \u010dl\u00e1nk\u016f, kter\u00e9 m\u011b sp\u00ed\u0161e vyd\u011bsily. Nev\u011bd\u011bla jsem, na koho se v p\u0159\u00edpad\u011b zdravotn\u00edch probl\u00e9m\u016f obr\u00e1tit,\u201c vysv\u011btluje Michela Linkov\u00e1, vedouc\u00ed pacientsk\u00e9 skupiny Skleroderma Revma Liga. Se \u017e\u00e1dost\u00ed o pomoc se na ni obrac\u00ed i t\u0159i pacienti t\u00fddn\u011b. Spole\u010dn\u011b s l\u00e9ka\u0159i proto p\u0159ichystali vzd\u011bl\u00e1vac\u00ed bro\u017euru Pr\u016fvodce syst\u00e9movou sklerodermi\u00ed pro nemocn\u00e9 a jejich bl\u00edzk\u00e9. Krom\u011b vzd\u011bl\u00e1v\u00e1n\u00ed pacient\u016f a po\u0159\u00e1d\u00e1n\u00ed webin\u00e1\u0159\u016f se pacientsk\u00e1 skupina tak\u00e9 sna\u017e\u00ed sklerodermiky povzbudit, aby se svou nemoc\u00ed bojovali a nevzd\u00e1vali se kon\u00ed\u010dk\u016f, kter\u00e9 je bav\u00ed. Pr\u00e1v\u011b u p\u0159\u00edle\u017eitosti sv\u011btov\u00e9ho dne proto spole\u010dn\u011b nato\u010dili tane\u010dn\u00ed video s n\u00e1zvem Vystihuj\u00ed m\u011b m\u00e9 v\u00e1\u0161n\u011b, ne m\u00e1 nemoc!<\/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 se z\u00e1va\u017en\u00fdm vz\u00e1cn\u00fdm autoimunitn\u00edm onemocn\u011bn\u00edm 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. V\u00edce na webu www.revmaliga.cz\/klub\/skleroderma<\/em><\/a>, Facebooku Skleroderma \u010cesk\u00e1 republika: www.facebook.com\/pacientskaskupina<\/em><\/a>nebo na Instagramu @skleroderma: 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. 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 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. 2021 \u2013 \u201eJe to jako kdyby byla na\u0161e k\u016f\u017ee o \u010d\u00edslo men\u0161\u00ed,\u201c popisuj\u00ed pacienti \u017eivot se syst\u00e9movou sklerodermi\u00ed. Autoimunitn\u00ed nemoc postihuje krom\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13142,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36285","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\/36285","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=36285"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36285\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13142"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36285"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36285"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36285"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}