{"id":40507,"date":"2023-06-26T10:44:48","date_gmt":"2023-06-26T08:44:48","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=40507"},"modified":"2023-06-26T10:50:51","modified_gmt":"2023-06-26T08:50:51","slug":"sklerodermie-muze-krome-kuze-ohrozit-i-vnitrni-organy","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=40507","title":{"rendered":"Sklerodermie m\u016f\u017ee ohrozit i vnit\u0159n\u00ed org\u00e1ny"},"content":{"rendered":"\n

Prvn\u00ed p\u0159\u00edznaky sklerodermie b\u00fdvaj\u00ed r\u016fznorod\u00e9 \u2013 otok rukou, bolesti kloub\u016f, hubnut\u00ed, probl\u00e9my s ch\u016fz\u00ed nebo s d\u00fdch\u00e1n\u00edm. O to t\u011b\u017e\u0161\u00ed je diagnostikovat toto vz\u00e1cn\u00e9 autoimunitn\u00ed onemocn\u011bn\u00ed v\u010das. Pacienty v\u011bt\u0161inou k n\u00e1v\u0161t\u011bv\u011b l\u00e9ka\u0159e donut\u00ed a\u017e barevn\u00e9 zm\u011bny a\u00a0bolav\u00e9 v\u0159edy na prstech jejich rukou. \u010casto nav\u00edc maj\u00ed pocit, jako by na sob\u011b m\u011bli k\u016f\u017ei o jedno \u010d\u00edslo men\u0161\u00ed. Sklerodermie ale v\u00e1\u017en\u011b postihuje i vnit\u0159n\u00ed org\u00e1ny, nap\u0159\u00edklad pl\u00edce, j\u00edcen, srdce nebo ledviny. Krom\u011b v\u010dasn\u00e9 diagn\u00f3zy je proto velmi d\u016fle\u017eit\u00e9, aby na l\u00e9\u010db\u011b pacienta spolupracovali l\u00e9ka\u0159i r\u016fzn\u00fdch specializac\u00ed. Odborn\u00edci na to upozor\u0148uj\u00ed v\u00a0souvislosti se Sv\u011btov\u00fdm dnem sklerodermie, kter\u00fd p\u0159ipad\u00e1 na 29. \u010dervna.<\/strong><\/p>\n\n\n\n

Hana\u00a0<\/strong>(50) z Brna \u2013 na um\u011bleck\u00e9 fotografii – se syst\u00e9movou sklerodermi\u00ed se pot\u00fdk\u00e1 skoro polovinu sv\u00e9ho \u017eivota, objevila se u n\u00ed hned po porodu. Spr\u00e1vnou diagn\u00f3zu se ale dozv\u011bd\u011bla a\u017e po n\u011bkolika letech tr\u00e1pen\u00ed – byla unaven\u00e1, bolela ji kolena, kr\u010dn\u00ed p\u00e1te\u0159, dostavilo se onemocn\u011bn\u00ed \u0161t\u00edtn\u00e9 \u017el\u00e1zy, probl\u00e9m s j\u00e1try, selh\u00e1n\u00ed srdce \u010di plicn\u00ed hypertenze. Aby pomohla \u0161\u00ed\u0159it pov\u011bdom\u00ed o sklerodermii, nafotila spolu s dal\u0161\u00edmi pacientkami um\u011bleck\u00e9 fotografie.<\/p>\n\n\n\n

\u201eTato slo\u017eit\u00e1 choroba vy\u017eaduje ucelen\u00fd p\u0159\u00edstup odborn\u00edk\u016f z\u00a0r\u016fzn\u00fdch obor\u016f, kte\u0159\u00ed vz\u00e1jemn\u011b spolupracuj\u00ed, aby nemocn\u00fdm se sklerodermi\u00ed poskytli nejlep\u0161\u00ed p\u00e9\u010di a l\u00e9\u010dbu,\u201c <\/em>vysv\u011btluje doc.\u00a0MUDr.\u00a0Tom\u00e1\u0161 Soukup, vedouc\u00ed l\u00e9ka\u0159 II. intern\u00ed gastroenterologick\u00e9 kliniky LF UK a FN v\u00a0Hradci Kr\u00e1lov\u00e9. \u201ePacienti k\u00a0n\u00e1m v\u011bt\u0161inou p\u0159ich\u00e1z\u00ed s modr\u00e1n\u00edm, b\u011blen\u00edm a chladnut\u00edm prst\u016f nebo s\u00a0posti\u017een\u00edm k\u016f\u017ee, kter\u00e9 postupuje od \u0161pi\u010dek prst\u016f a\u017e na obli\u010dej \u010di trup. Jejich k\u016f\u017ee je tuh\u00e1 a\u00a0napjat\u00e1, \u010dasto jim b\u011blaj\u00ed nebo modraj\u00ed prsty a maj\u00ed na nich bolestiv\u00e9 v\u0159edy. <\/em><\/p>\n\n\n\n

V\u00a0p\u0159\u00edpad\u011b, \u017ee se u\u00a0nemocn\u00fdch sklerodermie diagnostikuje, za\u010dneme jim ihned vy\u0161et\u0159ovat vnit\u0159n\u00ed org\u00e1ny,\u201c<\/em> dod\u00e1v\u00e1. Asi polovina pacient\u016f m\u00e1 toti\u017e zasa\u017eeny tak\u00e9 pl\u00edce a doch\u00e1z\u00ed u nich bu\u010f k\u00a0plicn\u00ed fibr\u00f3ze, nebo plicn\u00ed hypertenzi. Velk\u00e1 \u010d\u00e1st nemocn\u00fdch se pot\u00fdk\u00e1 s\u00a0posti\u017een\u00edm tr\u00e1vic\u00ed trubice, kter\u00e9 se projevuje refluxn\u00ed chorobou j\u00edcnu nebo probl\u00e9my se\u00a0\u017ealudkem a st\u0159evy. Pacienty tak tr\u00e1p\u00ed pocity nestr\u00e1ven\u00e9ho j\u00eddla nebo nad\u00fdm\u00e1n\u00ed. Doprovodn\u00fdm projevem sklerodermie jsou tak\u00e9 revmatick\u00e9 pot\u00ed\u017ee \u2013 nemocn\u00e9 \u010dasto bol\u00ed klouby. Posti\u017eeno m\u016f\u017ee b\u00fdt ale i srdce a vz\u00e1cn\u011bji ledviny.<\/p>\n\n\n\n

\u201eSklerodermie je l\u00e9\u010diteln\u00e1, ale nen\u00ed vyl\u00e9\u010diteln\u00e1. Neexistuje na ni univerz\u00e1ln\u00ed l\u00e9k. U pacient\u016f se soust\u0159ed\u00edme na c\u00e9vn\u00ed zm\u011bny souvisej\u00edc\u00ed s\u00a0v\u0159edy na prstech nebo plicn\u00ed hypertenz\u00ed a pomoc\u00ed l\u00e9k\u016f jim c\u00e9vy roz\u0161i\u0159ujeme. Um\u00edme tak\u00e9 l\u00e9\u010dit z\u00e1n\u011bt nemoci, kter\u00fd se projevuje v\u011bt\u0161inou na plic\u00edch, kloubech a k\u016f\u017ei. A d\u00edky modern\u00edm l\u00e9k\u016fm dok\u00e1\u017eeme ovlivnit i fibr\u00f3zu plic,\u201c<\/em> vysv\u011btluje docent Soukup. <\/p>\n\n\n\n

Vzhledem k\u00a0tomu, kolik org\u00e1n\u016f sklerodermie m\u016f\u017ee postihnout z\u00e1rove\u0148, hraje v\u00a0jej\u00ed l\u00e9\u010db\u011b z\u00e1sadn\u00ed roli tzv. multidisciplin\u00e1rn\u00ed spolupr\u00e1ce. \u201eMana\u017eerem sklerodermie by m\u011bl b\u00fdt revmatolog, kter\u00fd pot\u0159ebuje spolupracovat s\u00a0ostatn\u00edmi odborn\u00edky. Jsme proto v\u00a0neust\u00e1l\u00e9m kontaktu s\u00a0pneumology, radiology, kardiology, gastroenterology, rehabilita\u010dn\u00edmi l\u00e9ka\u0159i a fyzioterapeuty,\u201c<\/em> dopl\u0148uje doc. Soukup. Ide\u00e1ln\u00ed podle n\u011bj je, kdy\u017e se pacienti l\u00e9\u010d\u00ed ve specializovan\u00fdch\u00a0centrech, kde maj\u00ed revmatologov\u00e9 zku\u0161enosti se syst\u00e9movou sklerodermi\u00ed. V\u00a0sou\u010dasn\u00e9 dob\u011b jich je v\u00a0\u010cesk\u00e9 republice deset.<\/p>\n\n\n\n

Kv\u016fli z\u00e1va\u017enosti sklerodermie je d\u016fle\u017eit\u00e1 i psychologick\u00e1 podpora pacient\u016f. Nemocn\u00ed se mohou u\u017e p\u00e1t\u00fdm rokem obracet na pacientskou skupinu Skleroderma p\u016fsob\u00edc\u00ed v\u00a0r\u00e1mci organizace Revma Liga \u010cR. Jej\u00ed zakladatelkou a vedouc\u00ed je Michaela Linkov\u00e1, kter\u00e1 se s\u00a0touto nemoc\u00ed tak\u00e9 pot\u00fdk\u00e1. \u201eKdy\u017e mi p\u0159ed osmi lety \u0159ekli, \u017ee m\u00e1m sklerodermii, postr\u00e1dala jsem dostatek informac\u00ed. Proto jsem se pozd\u011bji rozhodla zalo\u017eit pacientskou skupinu Skleroderma. Nemocn\u00fdm prost\u0159ednictv\u00edm workshop\u016f uleh\u010dujeme \u017eivot a pom\u00e1h\u00e1me jim zvl\u00e1dat dopady sklerodermie. Kontaktovat n\u00e1s ale mohou tak\u00e9 ti, kte\u0159\u00ed maj\u00ed na sklerodermii podez\u0159en\u00ed,\u201c<\/em> vysv\u011btluje Michaela Linkov\u00e1. Sama m\u00e1 za sebou dramatick\u00fd pr\u016fb\u011bh t\u00e9to nemoci. Postupn\u011b ztr\u00e1cela schopnost pohybu a ch\u016fze, do\u0161lo u n\u00ed k\u00a0posti\u017een\u00ed k\u016f\u017ee a plic a k\u00a0rychl\u00e9mu zhor\u0161en\u00ed zdravotn\u00edho stavu. Na \u010das dokonce upadla do k\u00f3matu s\u00a0hypertenzn\u00ed kriz\u00ed, selh\u00e1n\u00edm ledvin, otokem mozku a z\u00e1palem plic. D\u00edky p\u00e9\u010di l\u00e9ka\u0159\u016f, pomoci druh\u00fdch i sv\u00e9 siln\u00e9 v\u016fli se ale s\u00a0nemoc\u00ed dok\u00e1zala poprat a po t\u0159ech letech od stanoven\u00ed diagn\u00f3zy mohla za\u010d\u00edt pomalu \u010d\u00e1ste\u010dn\u011b pracovat. <\/p>\n\n\n\n

\u201eSklerodermii \u00fapln\u011b vyl\u00e9\u010dit nelze, tak\u017ee m\u00e1m st\u00e1le \u0159adu probl\u00e9m\u016f. Sna\u017e\u00edm se ale v\u00e9st co nejnorm\u00e1ln\u011bj\u0161\u00ed \u017eivot. A p\u0159ed\u00e1vat sv\u00e9 zku\u0161enosti d\u00e1l. U ka\u017ed\u00e9ho pacienta se pr\u016fb\u011bh onemocn\u011bn\u00ed a m\u00edra posti\u017een\u00ed li\u0161\u00ed. Ne v\u017edy mus\u00ed m\u00edt nemoc tak dramatick\u00fd v\u00fdvoj jako v m\u00e9m p\u0159\u00edpad\u011b. Na pr\u016fb\u011bh nemoci m\u00e1 ur\u010dit\u011b vliv nejenom vhodn\u00e1 l\u00e9\u010dba, ale i psychika samotn\u00e9ho pacienta,\u201c <\/em>\u0159\u00edk\u00e1 Michaela Linkov\u00e1.<\/p>\n\n\n\n

D\u00edky pacientsk\u00e9 skupin\u011b Skleroderma mohou nemocn\u00ed z\u00a0cel\u00e9 \u010cesk\u00e9 republiky vyu\u017e\u00edvat psychologick\u00fdch konzultac\u00ed v Revmaporadn\u011b, kter\u00e1 je unik\u00e1tn\u00ed nap\u0159\u00edklad v\u00a0tom, \u017ee se v\u00a0n\u00ed na objednac\u00ed term\u00edn ne\u010dek\u00e1 dlouho. Pacienti mohou poradnu nav\u0161t\u00edvit osobn\u011b v\u00a0Praze nebo maj\u00ed mo\u017enost domluvit si s\u00a0psycholo\u017ekou sch\u016fzku online. \u201ePro spoustu \u010cech\u016f je bohu\u017eel n\u00e1v\u0161t\u011bva psychologa st\u00e1le tabu. Pacienti se j\u00ed ale nemus\u00ed ob\u00e1vat, u\u00a0chronick\u00fdch onemocn\u011bn\u00ed je konzultace s\u00a0psychologem velmi d\u016fle\u017eitou sou\u010d\u00e1st\u00ed l\u00e9\u010dby. Psycholog jim v\u00fdznamn\u011b pom\u00e1h\u00e1 zvl\u00e1dat t\u011b\u017ekou \u017eivotn\u00ed situaci. Nemocn\u00ed od n\u00e1s maj\u00ed zaji\u0161t\u011bna t\u0159i a\u017e \u010dty\u0159i sezen\u00ed s\u00a0psycholo\u017ekou zdarma,\u201c<\/em> dod\u00e1v\u00e1 Michaela Linkov\u00e1.<\/p>\n\n\n\n

<\/p>\n\n\n\n

\"\"\/<\/figure>\n\n\n\n

O Revmaporadn\u011b<\/strong><\/p>\n\n\n\n

Revmaporadna je spole\u010dn\u00fdm projektem pacientsk\u00e9 skupiny Skleroderma, spole\u010dnosti Boehringer Ingelheim a spole\u010dnosti uL\u00e9ka\u0159e.cz. Jedn\u00e1 se o \u201eakutn\u00ed\u201c psychologickou pomoc nejen nov\u011b diagnostikovan\u00fdm pacient\u016fm se syst\u00e9movou sklerodermi\u00ed a myozitidou, ale i t\u011bm, kte\u0159\u00ed se s t\u00edmto onemocn\u011bn\u00edm dosud nevyrovnali. Z\u00e1jemci mohou vyu\u017e\u00edt psychologick\u00e9 konzultace zdarma. Revmaporadnu je mo\u017en\u00e9 nav\u0161t\u00edvit bu\u010f osobn\u011b v Praze, nebo si v n\u00ed sjednat sch\u016fzku online. V\u00edce na www.revmaporadna.cz<\/a>.<\/p>\n\n\n\n

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

Pacientsk\u00e1 skupina Skleroderma p\u016fsob\u00ed v r\u00e1mci organizace Revma Liga \u010cR. Od roku 2018 pom\u00e1h\u00e1 pacient\u016fm se z\u00e1va\u017en\u00fdm a vz\u00e1cn\u00fdm autoimunitn\u00edm onemocn\u011bn\u00edm syst\u00e9mov\u00e1 sklerodermie. Krom\u011b poskytov\u00e1n\u00ed psychologick\u00e9 pomoci pacientsk\u00e1 skupina Skleroderma organizuje p\u0159edn\u00e1\u0161ky, tematick\u00e9 workshopy a webin\u00e1\u0159e a vyd\u00e1v\u00e1 pro pacienty odborn\u00e9 publikace. V\u00edce na www.revmaliga.cz\/klub\/skleroderma<\/a>.<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Prvn\u00ed p\u0159\u00edznaky sklerodermie b\u00fdvaj\u00ed r\u016fznorod\u00e9 \u2013 otok rukou, bolesti kloub\u016f, hubnut\u00ed, probl\u00e9my s ch\u016fz\u00ed nebo s d\u00fdch\u00e1n\u00edm. O to t\u011b\u017e\u0161\u00ed je diagnostikovat toto vz\u00e1cn\u00e9 autoimunitn\u00ed […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":40509,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-40507","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\/40507","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=40507"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40507\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/40509"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40507"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40507"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40507"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}