{"id":30850,"date":"2018-09-07T13:54:03","date_gmt":"2018-09-07T11:54:03","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30850"},"modified":"2018-09-07T13:54:03","modified_gmt":"2018-09-07T11:54:03","slug":"stovky-lidi-s-ipf-nedostavaji-lecbu-ktera-by-smrtelnou-nemoc-zpomalila","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30850","title":{"rendered":"Stovky lid\u00ed s IPF nedost\u00e1vaj\u00ed l\u00e9\u010dbu, kter\u00e1 by smrtelnou nemoc zpomalila"},"content":{"rendered":"<p><strong>Pocit, jako kdy\u017e se top\u00ed, za\u017e\u00edvaj\u00ed denn\u011b stovky lid\u00ed, kte\u0159\u00ed trp\u00ed idiopatickou plicn\u00ed fibr\u00f3zou (IPF) \u2013 smrtelnou nemoc\u00ed, jej\u00ed\u017e postup jde spr\u00e1vnou l\u00e9\u010dbou z\u00e1sadn\u011b zpomalit. Aby se tak ale stalo, mus\u00ed l\u00e9ka\u0159 nemoc odhalit v\u010das a rychle pacienta poslat do n\u011bkter\u00e9ho ze specializovan\u00fdch center, kde mu um\u00ed pomoci. To se bohu\u017eel \u010dasto ned\u011bje a v centrech se l\u00e9\u010d\u00ed zhruba 50 % t\u011bch, co by l\u00e9\u010dbu pot\u0159ebovali a mohli m\u00edt. Na tento alarmuj\u00edc\u00ed stav upozor\u0148uj\u00ed plicn\u00ed l\u00e9ka\u0159i v souvislosti s T\u00fddnem IPF, kter\u00fd letos startuje 13. z\u00e1\u0159\u00ed.<\/strong><!--more--><\/p>\n<p>\u201ePodle na\u0161ich odhad\u016f je nyn\u00ed v tuzemsku asi 2 000 lid\u00ed s IPF. V centrech a v na\u0161em registru IPF \u2013 EMPIRE, kde \u00fadaje o nemocn\u00fdch shroma\u017e\u010fujeme, v\u00edme o p\u016flce z nich \u2013 917. U druh\u00e9 poloviny netu\u0161\u00edme, kde jsou. Velmi pravd\u011bpodobn\u011b tak nedost\u00e1vaj\u00ed adekv\u00e1tn\u00ed l\u00e9\u010dbu,\u201c \u0159\u00edk\u00e1 prof. MUDr. Martina Va\u0161\u00e1kov\u00e1, Ph.D., p\u0159ednostka Pneumologick\u00e9 kliniky 1. l\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy a Thomayerovy nemocnice v Praze a p\u0159edsedkyn\u011b Sekce pro interstici\u00e1ln\u00ed plicn\u00ed procesy (SIPP).<\/p>\n<p>D\u016fvod\u016f m\u016f\u017ee b\u00fdt podle prof. Va\u0161\u00e1kov\u00e9 v\u00edce. Nemoc se v\u011bt\u0161inou objevuje a\u017e po \u0161edes\u00e1tce, a proto \u0159ada nemocn\u00fdch zpo\u010d\u00e1tku nepova\u017euje poka\u0161l\u00e1v\u00e1n\u00ed a zad\u00fdch\u00e1v\u00e1n\u00ed za p\u0159\u00edznak t\u011b\u017ek\u00e9 nemoci, ale za projev st\u00e1rnut\u00ed, ztr\u00e1tu kondice \u010di n\u00e1sledek kou\u0159en\u00ed. Oddaluj\u00ed tak n\u00e1v\u0161t\u011bvu l\u00e9ka\u0159e, dokud nen\u00ed pozd\u011b. Ob\u010das projevy IPF zam\u011bn\u00ed za jinou plicn\u00ed \u010di srde\u010dn\u00ed nemoc samotn\u00ed l\u00e9ka\u0159i, nej\u010dast\u011bji plicn\u00ed a prakti\u010dt\u00ed.<\/p>\n<p>\u201eIPF je jasn\u011b rozeznateln\u00e1 \u2013 p\u0159i poslechu plic l\u00e9ka\u0159 sly\u0161\u00ed charakteristick\u00fd zvuk p\u0159ipom\u00ednaj\u00edc\u00ed odep\u00edn\u00e1n\u00ed such\u00e9ho zipu nebo ch\u016fzi po zmrzl\u00e9m sn\u011bhu, tzv. krepitus. Lid\u00e9, kte\u0159\u00ed nemoc\u00ed trp\u00ed, m\u00edvaj\u00ed tak\u00e9 pali\u010dkovit\u00e9 prsty s nehty tvaru hodinov\u00e9ho skl\u00ed\u010dka,\u201d vysv\u011btluje profesorka Va\u0161\u00e1kov\u00e1. \u010c\u00edm d\u0159\u00edve se na nemoc p\u0159ijde, t\u00edm v\u011bt\u0161\u00ed m\u00e1 pacient \u0161anci na jej\u00ed zastaven\u00ed po dal\u0161\u00ed roky, na zkvalitn\u011bn\u00ed \u017eivota a zv\u00fd\u0161en\u00ed \u0161ance, \u017ee se do\u010dk\u00e1 transplantace plic. Bez spr\u00e1vn\u00e9 l\u00e9\u010dby um\u00edr\u00e1 do 3 let.<\/p>\n<p>\u201eIPF je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, s n\u00edm\u017e se praktik setk\u00e1v\u00e1 raritn\u011b. Je d\u016fle\u017eit\u00e9, aby o t\u00e9to nemoci v\u011bd\u011bl a myslel na ni p\u0159i diferenci\u00e1ln\u00ed diagnostice pacienta,\u201c dopl\u0148uje MUDr. Petr \u0160onka, p\u0159edseda Sdru\u017een\u00ed praktick\u00fdch l\u00e9ka\u0159\u016f \u010cR.<\/p>\n<p>IPF po\u0161kozuje plicn\u00ed skl\u00edpky, jizv\u00ed je \u2013 bere tak plochu k d\u00fdch\u00e1n\u00ed, pl\u00edce tuhnou a \u010dlov\u011bk se nem\u016f\u017ee nadechnout. K nejnov\u011bj\u0161\u00ed l\u00e9\u010db\u011b se dostanou pouze lid\u00e9 v centrech pro l\u00e9\u010dbu interstici\u00e1ln\u00edch plicn\u00edch proces\u016f, kter\u00fdch je v republice 17.<\/p>\n<p>Ter\u00e9nn\u00edm pneumolog\u016fm a radiolog\u016fm by nov\u011b m\u011bla se spr\u00e1vnou diagn\u00f3zou pomoci aplikace IPFchecker. P\u0159i podez\u0159en\u00ed na IPF zad\u00e1 pneumolog do aplikace z\u00e1kladn\u00ed parametry z klinick\u00e9ho vy\u0161et\u0159en\u00ed pacienta a obratem obdr\u017e\u00ed informaci, zda pacienta poslat k radiologovi do specializovan\u00e9ho centra na tzv. HRCT (po\u010d\u00edta\u010dov\u00e1 tomografie s vysok\u00fdm rozli\u0161en\u00edm vhodn\u00e1 pro vy\u0161et\u0159en\u00ed plic). Aplikace obsahuje i nahr\u00e1vku krepitu. Radiolog o n\u00e1lezu informuje pneumologa, a ten v p\u0159\u00edpad\u011b stanoven\u00ed diagn\u00f3zy IPF po\u017e\u00e1d\u00e1 prost\u0159ednictv\u00edm aplikace o um\u00edst\u011bn\u00ed pacienta v n\u011bkter\u00e9m ze specializovan\u00fdch center.<\/p>\n<p>Dal\u0161\u00edm krokem, kter\u00fdm se l\u00e9ka\u0159i pokou\u0161\u00ed zachytit nemoc v\u010das, je tradi\u010dn\u00ed den otev\u0159en\u00fdch dve\u0159\u00ed ve vybran\u00fdch ambulanc\u00edch plicn\u00edch l\u00e9ka\u0159\u016f. Letos p\u0159ipad\u00e1 na 13. 9. a lid\u00e9 se zde mohou nechat vy\u0161et\u0159it zdarma a bez doporu\u010den\u00ed od praktick\u00e9ho l\u00e9ka\u0159e. Letos se k akci p\u0159ihl\u00e1silo 62 ambulanc\u00ed, jejich kompletn\u00ed seznam je na www.plicnifibroza.cz. \u201eV roce 2017 jsme takto zachytili 6 lid\u00ed s podez\u0159en\u00edm na IPF,\u201d \u0159\u00edk\u00e1 MUDr. Ivana \u010cierna Peterov\u00e1, p\u0159edsedkyn\u011b ambulantn\u00edch pneumolog\u016f.<\/p>\n<p>T\u00fdden IPF a pacienty s touto nemoc\u00ed tradi\u010dn\u011b podporuje re\u017eis\u00e9r Sl\u00e1vek Hor\u00e1k, kter\u00fd v \u010cR i v zahrani\u010d\u00ed zabodoval s filmem Dom\u00e1c\u00ed p\u00e9\u010de.<\/p>\n<p>O Sekci interstici\u00e1ln\u00edch plicn\u00edch proces\u016f (SIPP)<\/p>\n<p>SIPP \u010cesk\u00e9 pneumologick\u00e9 a ftizeologick\u00e9 spole\u010dnosti v\u011bnuje speci\u00e1ln\u011b IPF velik\u00e9 \u00fasil\u00ed a krom\u011b snahy o \u0161\u00ed\u0159en\u00ed informac\u00ed o t\u00e9to nemoci mezi ostatn\u00ed l\u00e9ka\u0159skou, ale i laickou ve\u0159ejnost, tak\u00e9 zalo\u017eila a vede registr IPF EMPIRE (European Multipartner IPF Registry). Ten krom\u011b center v \u010cesk\u00e9 republice zahrnuje i centra na Slovensku, v Polsku a Ma\u010farsku a p\u0159idru\u017euje se Srbsko, Slovinsko, Chorvatsko a Turecko. Registr d\u00e1v\u00e1 mo\u017enost nahl\u00e9dnout do epidemiologie IPF a do re\u00e1ln\u00fdch l\u00e9\u010debn\u00fdch v\u00fdsledk\u016f t\u00e9to nemoci. P\u0159i zav\u00e1d\u011bn\u00ed nov\u00fdch l\u00e9k\u016f na plicn\u00ed fibr\u00f3zu lze dle \u00fadaj\u016f z registru vid\u011bt, kolik pacient\u016f pro dan\u00fd l\u00e9k \u010di klinickou studii mohou l\u00e9ka\u0159i vyu\u017e\u00edt a kter\u00fdm konkr\u00e9tn\u00edm pacient\u016fm nov\u00fd l\u00e9k nab\u00eddnout.<\/p>\n<p>SIPP tak\u00e9 na z\u00e1klad\u011b mezin\u00e1rodn\u00edch doporu\u010den\u00ed a nov\u00fdch poznatk\u016f op\u0159en\u00fdch o medic\u00ednu zalo\u017eenou na d\u016fkazech sestavuje doporu\u010den\u00ed k diagnostice a l\u00e9\u010db\u011b jednotliv\u00fdch interstici\u00e1ln\u00edch plicn\u00edch proces\u016f (IPP). D\u00e1le se star\u00e1 o zaji\u0161t\u011bn\u00ed s\u00edt\u011b pracovi\u0161\u0165 specializovan\u00fdch na p\u00e9\u010di o pacienty s IPP, aby l\u00e9ka\u0159i v\u011bd\u011bli, kam se maj\u00ed obr\u00e1tit se \u017e\u00e1dost\u00ed o konzultaci, dovy\u0161et\u0159en\u00ed pacienta \u010di o jeho l\u00e9\u010dbu. Podporuje v\u00fdzkum a publika\u010dn\u00ed aktivitu v oblasti IPP na \u00fazem\u00ed \u010cesk\u00e9 republiky.<\/p>\n<p>Tiskov\u00e1 zpr\u00e1va<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Pocit, jako kdy\u017e se top\u00ed, za\u017e\u00edvaj\u00ed denn\u011b stovky lid\u00ed, kte\u0159\u00ed trp\u00ed idiopatickou plicn\u00ed fibr\u00f3zou (IPF) \u2013 smrtelnou nemoc\u00ed, jej\u00ed\u017e postup jde spr\u00e1vnou l\u00e9\u010dbou z\u00e1sadn\u011b zpomalit. <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=30850\" title=\"Stovky lid\u00ed s IPF nedost\u00e1vaj\u00ed l\u00e9\u010dbu, kter\u00e1 by smrtelnou nemoc zpomalila\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":15420,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-30850","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\/30850","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=30850"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30850\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/15420"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30850"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30850"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30850"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}