{"id":31874,"date":"2019-06-27T14:05:40","date_gmt":"2019-06-27T12:05:40","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=31874"},"modified":"2019-06-28T16:04:14","modified_gmt":"2019-06-28T14:04:14","slug":"nemoc-jim-bere-energii-krasu-i-zivot","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=31874","title":{"rendered":"Nemoc jim bere energii, kr\u00e1su i \u017eivot"},"content":{"rendered":"<p><strong>Na tuto sobotu 29. \u010dervna p\u0159ipad\u00e1 Sv\u011btov\u00fd den sklerodermie. Pacientsk\u00e1 skupina Skleroderma se rozhodla za asistence profesion\u00e1l\u016f nafotit portr\u00e9ty pacient\u016f a vytvo\u0159it z nich kalend\u00e1\u0159. C\u00edlem akce je podpora a motivace nemocn\u00fdch.<\/strong><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p>Pacienti se domluvili s fotografkou Lenkou Hata\u0161ovou a p\u0159ipravili akci s mottem \u201eI \u017eeny se syst\u00e9movou sklerodermi\u00ed mohou b\u00fdt kr\u00e1sn\u00e9\u201c. \u0160est pacientek se sklerodermi\u00ed p\u0159i\u0161lo 18. \u010dervna do kade\u0159nick\u00e9 \u0161koly na Praze 8, kde se jich ujali kade\u0159n\u00edci, stylist\u00e9 a viz\u00e1\u017eist\u00e9. Nafotili portr\u00e9tov\u00e9 fotografie, je\u017e pak Skleroderma vyu\u017eije k dal\u0161\u00ed osv\u011bt\u011b tohoto vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed.<\/p>\n<p>Na prom\u011bn\u011b pacientek spolupracoval zn\u00e1m\u00fd stylista a viz\u00e1\u017eista K\u00e1ja Pavl\u00ed\u010dek. Akci podpo\u0159ila here\u010dka B\u00e1ra Fi\u0161erov\u00e1 nebo moder\u00e1tor Evropy 2 Tom\u00e1\u0161 Z\u00e1st\u011bra.<\/p>\n<p>Nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed, p\u0159i kter\u00e9m pacient\u016fm tuhne k\u016f\u017ee, se projevuje p\u0159edev\u0161\u00edm \u010dastou \u00fanavou, bolestmi kloub\u016f, postupn\u00fdm tuhnut\u00edm \u017eiv\u00fdch tk\u00e1n\u00ed a devastac\u00ed vnit\u0159n\u00edch org\u00e1n\u016f. V \u010cesk\u00e9 republice trp\u00ed syst\u00e9movou sklerodermi\u00ed odhadem asi 600\u2013800 pacient\u016f. A\u017e 8\u00d7 \u010dast\u011bji postihuje \u017eeny. Obvykle se objevuje kolem 20\u201350 let, \u010dasto u lid\u00ed, kte\u0159\u00ed byli doposud zcela zdr\u00e1vi a \u017eili aktivn\u00edm \u017eivotem.<\/p>\n<p>P\u0159\u00ed\u010dinu choroby l\u00e9ka\u0159i neznaj\u00ed. Shoduj\u00ed se v\u0161ak, \u017ee v\u00fdznamnou roli hraje genetick\u00e1 predispozice, faktory prost\u0159ed\u00ed a tak\u00e9 stres. \u201eJedn\u00e1 se o autoimunitn\u00ed onemocn\u011bn\u00ed, kter\u00e9 se co do pr\u016fb\u011bhu i rozsahu posti\u017een\u00ed u jednotliv\u00fdch pacient\u016f velmi li\u0161\u00ed. Postihuje drobn\u00e9 c\u00e9vy a tak\u00e9 k\u016f\u017ei a podko\u017e\u00ed, kter\u00e9 tuhnou a omezuj\u00ed pohyblivost kloub\u016f. M\u016f\u017ee za to ukl\u00e1d\u00e1n\u00ed velk\u00e9ho mno\u017estv\u00ed kolagenu do k\u016f\u017ee. Stejn\u00fd d\u011bj prob\u00edh\u00e1 ve st\u011bn\u011b c\u00e9v a vnit\u0159n\u00edch org\u00e1nech,\u201c vysv\u011btluje doc. MUDr. Radim Be\u010dv\u00e1\u0159, CSc., z Revmatologick\u00e9ho \u00fastavu a Revmatologick\u00e9 kliniky 1. LF UK v Praze. Krom\u011b k\u016f\u017ee postihuje nemoc tak\u00e9 tr\u00e1vic\u00ed \u00fastroj\u00ed, pl\u00edce, ledviny nebo srdce. \u010cast\u00fd je rozvoj v\u0159ed\u016f a nekr\u00f3z na prstech rukou.<\/p>\n<p>\u201eNa z\u00e1klad\u011b vlastn\u00edch zku\u0161enost\u00ed m\u016f\u017eu \u0159\u00edct, \u017ee l\u00e9\u010dba tvo\u0159\u00ed jen asi 50 % \u00fasp\u011bchu. T\u011bch zb\u00fdvaj\u00edc\u00edch 50 % p\u0159edstavuje pr\u00e1ce se sebou sam\u00fdm \u2013 to znamen\u00e1 m\u011bnit \u0161patn\u011b nastaven\u00e9 stereotypy a nau\u010dit se \u017e\u00edt pokud mo\u017eno bez stresu,\u201c uv\u00e1d\u00ed Michaela Linkov\u00e1, vedouc\u00ed a koordin\u00e1torka pacientsk\u00e9 skupiny a z\u00e1rove\u0148 pacientka. D\u00edky skupin\u011b maj\u00ed pacienti mo\u017enost se osobn\u011b potk\u00e1vat, sd\u011blovat si vlastn\u00ed zku\u0161enosti, ale tak\u00e9 z\u00edskat o vz\u00e1cn\u00e9 nemoci pot\u0159ebn\u00e9 informace. \u201ePoch\u00e1z\u00edm ze severn\u00ed Moravy, kde o sklerodermii dodnes nev\u00ed 99 % l\u00e9ka\u0159\u016f. Nejt\u011b\u017e\u0161\u00ed pro m\u011b nebylo dozv\u011bd\u011bt se diagn\u00f3zu, ale v\u011bd\u011bt, \u017ee se mnou n\u011bco nen\u00ed v po\u0159\u00e1dku, a p\u0159itom nev\u011bd\u011bt co. L\u00e9ka\u0159i m\u011b m\u011bli za bl\u00e1zna, musela jsem absolvovat i vy\u0161et\u0159en\u00ed na psychiatrii,\u201c popisuje svoji zku\u0161enost 31let\u00e1 Lucka. V\u010dasn\u00e1 diagn\u00f3za a rychl\u00e9 nasazen\u00ed l\u00e9\u010dby je p\u0159itom z\u00e1sadn\u00ed pro to, aby se nemoc d\u00e1l nerozv\u00edjela.<\/p>\n<p>Krom\u011b toho, \u017ee ztuhl\u00e1 k\u016f\u017ee omezuje hybnost pacient\u016f i funkci jemn\u00e9 motoriky, ovliv\u0148uje tak\u00e9 jejich vzhled. \u201eV nejhor\u0161\u00ed f\u00e1zi jsem si p\u0159ipadala, jako by mi moje k\u016f\u017ee byla tak o dv\u011b \u010d\u00edsla men\u0161\u00ed,\u201c popisuje Michaela Linkov\u00e1.<\/p>\n<p>&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;<\/p>\n<p>Foto: Koordin\u00e1torka pacientsk\u00e9 skupiny skleroderma a z\u00e1rove\u0148 pacientka se sklerodermi Michaela Linkov\u00e1 se v rukou kade\u0159nice p\u0159ipravuje na focen\u00ed kalend\u00e1\u0159e s Lenkou Hata\u0161ovou. Kalend\u00e1\u0159 bude d\u00e1l slou\u017eit pro osv\u011btu vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed, kter\u00fdm v \u010cR trp\u00ed p\u0159ibli\u017en\u011b 800 pacient\u016f.<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Na tuto sobotu 29. \u010dervna p\u0159ipad\u00e1 Sv\u011btov\u00fd den sklerodermie. Pacientsk\u00e1 skupina Skleroderma se rozhodla za asistence profesion\u00e1l\u016f nafotit portr\u00e9ty pacient\u016f a vytvo\u0159it z nich kalend\u00e1\u0159. <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=31874\" title=\"Nemoc jim bere energii, kr\u00e1su i \u017eivot\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":31876,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,9],"tags":[],"class_list":["post-31874","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31874","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=31874"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31874\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/31876"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=31874"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=31874"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=31874"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}