Na \u00fater\u00fd 28. \u00fanora 2017 p\u0159ipad\u00e1 Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Mezi n\u011b pat\u0159\u00ed tak\u00e9 mnoho\u010detn\u00fd myelom, kter\u00fdm ro\u010dn\u011b onemocn\u00ed 4\u20136 pacient\u016f na 100 000 obyvatel. V sou\u010dasn\u00e9 dob\u011b je ji\u017e na\u0161t\u011bst\u00ed pro pacienty dostupn\u00e1 l\u00e9\u010dba a to i pro ty, kter\u00fdm se nemoc po prvotn\u00edm vyl\u00e9\u010den\u00ed vr\u00e1t\u00ed.<\/p>\n
S mnoho\u010detn\u00fdm myelomem je v sou\u010dasn\u00e9 dob\u011b v \u010cesk\u00e9 republice sledov\u00e1no p\u0159ibli\u017en\u011b 2 500 pacient\u016f a toto \u010d\u00edslo, podle p\u0159edn\u00edch odborn\u00edk\u016f na l\u00e9\u010dbu tohoto onemocn\u011bn\u00ed, st\u00e1le vzr\u016fst\u00e1. Ka\u017ed\u00fdm rokem je toti\u017e nemoc odhalena u dal\u0161\u00edch 500 \u010cech\u016f.<\/p>\n
Mnoho\u010detn\u00fd myelom m\u00edv\u00e1 ve sv\u00e9 po\u010d\u00e1te\u010dn\u00ed f\u00e1zi velmi nespecifick\u00e9 p\u0159\u00edznaky, proto b\u00fdv\u00e1 mnohdy pacient\u016fm diagnostikov\u00e1n a\u017e v pokro\u010dil\u00e9m st\u00e1diu. Onemocn\u011bn\u00ed \u010dasto prov\u00e1z\u00ed zv\u00fd\u0161en\u00e9 odbour\u00e1v\u00e1n\u00ed kostn\u00ed hmoty, proto jsou jeho prvn\u00edmi sign\u00e1ly obvykle bolesti zad v oblasti beder a hrudn\u00edku a celkov\u00e1 bolest pohybov\u00e9ho apar\u00e1tu. U n\u011bkter\u00fdch nemocn\u00fdch m\u016f\u017ee doj\u00edt dokonce k patologick\u00fdm zlomenin\u00e1m, kter\u00e9 vznikaj\u00ed za minim\u00e1ln\u00ed anebo dokonce bez jak\u00e9koliv z\u00e1t\u011b\u017ee. Nemocn\u00ed mohou d\u00e1le poci\u0165ovat hlubokou \u00fanavu bez vyvol\u00e1vaj\u00edc\u00ed p\u0159edchoz\u00ed n\u00e1mahy. Kv\u016fli siln\u011b oslaben\u00e9 imunit\u011b se pacienti pot\u00fdkaj\u00ed s \u010dast\u00fdmi infekcemi. N\u011bkte\u0159\u00ed pacienti mohou trp\u011bt nechutenstv\u00edm, \u010d\u00edm\u017e ztr\u00e1c\u00ed na hmotnosti.<\/p>\n
\u201eV po\u010d\u00e1te\u010dn\u00edm st\u00e1diu lze nemoc odhalit pouze p\u0159i preventivn\u00ed prohl\u00eddce, na kter\u00e9 praktick\u00fd l\u00e9ka\u0159 provede laboratorn\u00ed vy\u0161et\u0159en\u00ed krve. V\u00fdsledky odhal\u00ed vysokou sedimentaci krvinek, v krevn\u00edm obraze b\u00fdv\u00e1 an\u00e9mie, p\u0159i biochemick\u00e9m vy\u0161et\u0159en\u00ed s\u00e9ra je \u010dasto zv\u00fd\u0161en\u00e1 celkov\u00e1 b\u00edlkovina a n\u011bkdy i koncentrace kreatininu,\u201c vysv\u011btluje prof. MUDr. Vladim\u00edr Maisnar, Ph.D., MBA, z\u00e1stupce p\u0159ednosty pro klinick\u00fd v\u00fdzkum na IV. Intern\u00ed hematologick\u00e9 klinice Fakultn\u00ed nemocnice a L\u00e9ka\u0159sk\u00e9 fakulty UK v Hradci Kr\u00e1lov\u00e9 a 1. m\u00edstop\u0159edseda \u010cesk\u00e9 myelomov\u00e9 skupiny (CMG).<\/p>\n
\u00dasp\u011bch l\u00e9\u010dby spo\u010d\u00edv\u00e1 v \u010dasn\u00e9 diagnostice nemoci<\/p>\n
Volba l\u00e9\u010dby u mnoho\u010detn\u00e9ho myelomu se odv\u00edj\u00ed od v\u011bku pacienta a st\u00e1dia nemoci, ve kter\u00e9m se nemocn\u00fd nach\u00e1z\u00ed. U nemocn\u00fdch mlad\u0161\u00edch 70 let se choroba l\u00e9\u010d\u00ed pomoc\u00ed transplantace kmenov\u00fdch bun\u011bk krvetvorby, kter\u00e1 z\u016fst\u00e1v\u00e1 nad\u00e1le nej\u00fa\u010dinn\u011bj\u0161\u00ed l\u00e9\u010dbou, a chemoterapi\u00ed s vyu\u017eit\u00edm nov\u00fdch tzv. biologick\u00fdch l\u00e9k\u016f. L\u00e9\u010dbu je ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f nutn\u00e9 podpo\u0159it i m\u00edrn\u011bn\u00edm bolest\u00ed, pod\u00e1vaj\u00ed se l\u00e9ky sni\u017euj\u00edc\u00ed odbour\u00e1v\u00e1n\u00ed kost\u00ed, n\u011bkdy se vyu\u017e\u00edv\u00e1 i n\u00e1sledn\u00e9 oza\u0159ov\u00e1n\u00ed. \u010c\u00edm d\u0159\u00edve se pacient za\u010dne l\u00e9\u010dit, t\u00edm lep\u0161\u00edch v\u00fdsledk\u016f terapie dosahuje.<\/p>\n
U v\u011bt\u0161iny nemocn\u00fdch doch\u00e1z\u00ed v budoucnu p\u0159es absolvov\u00e1n\u00ed \u00favodn\u00ed l\u00e9\u010dby k n\u00e1vratu onemocn\u011bn\u00ed. U n\u011bkolika m\u00e1lo procent lze zopakovat transplantaci, v\u011bt\u0161in\u011b pacient\u016f to ale jejich zdravotn\u00ed stav nebo v\u011bk ji\u017e nedovol\u00ed. L\u00e9\u010dba mnoho\u010detn\u00e9ho myelomu v\u0161ak zaznamenala v posledn\u00edch letech velk\u00fd v\u00fdvoj a pro pacienty je dnes dostupn\u00e1 zcela nov\u00e1 generace l\u00e9\u010div. D\u00edky n\u00ed jsou l\u00e9ka\u0159i schopni udr\u017eet chorobu pod kontrolou natolik, \u017ee s n\u00ed pacienti mohou \u017e\u00edt \u0159adu let jako s jin\u00fdm chronick\u00fdm onemocn\u011bn\u00edm.<\/p>\n
Celosv\u011btov\u011b trp\u00ed mnoho\u010detn\u00fdm myelomem 230 tis\u00edc osob a ka\u017ed\u00fdm rokem je nemoc diagnostikov\u00e1na dal\u0161\u00edm 114 tis\u00edc\u016fm lid\u00ed.<\/p>\n
Mezi vz\u00e1cn\u00e9 nemoci se \u0159ad\u00ed choroby, kter\u00e9 postihuj\u00ed m\u00e9n\u011b ne\u017e 10 lid\u00ed na 100 000 obyvatel ro\u010dn\u011b.<\/p>\n
O Klubu pacient\u016f mnoho\u010detn\u00fd myelom<\/p>\n
Klub pacient\u016f mnoho\u010detn\u00fd myelom byl ofici\u00e1ln\u011b zalo\u017een v b\u0159eznu 2007. Jeho vznik byl v\u00fdznamn\u011b podpo\u0159en l\u00e9ka\u0159i z \u010cesk\u00e9 myelomov\u00e9 skupiny. V sou\u010dasnosti m\u00e1 p\u011bt region\u00e1ln\u00edch skupin (Klub\u016f), kter\u00e9 postupn\u011b vznikaly v Brn\u011b, Praze, Hradci Kr\u00e1lov\u00e9, Plzni a Olomouci. Hlavn\u00edm d\u016fvodem pro vznik Klubu pacient\u016f mnoho\u010detn\u00fd myelom byla ambice podpo\u0159it pacienty a jejich bl\u00edzk\u00e9 p\u0159i zvl\u00e1d\u00e1n\u00ed obt\u00ed\u017en\u00e9 \u017eivotn\u00ed situace vytvo\u0159en\u00edm \u017eivotaschopn\u00e9 informa\u010dn\u00ed z\u00e1kladny nab\u00edzej\u00edc\u00ed aktuality o mo\u017enostech l\u00e9\u010dby, dostupnosti nejmodern\u011bj\u0161\u00edch l\u00e9k\u016f, alternativn\u00edch postupech a dal\u0161\u00edch novink\u00e1ch souvisej\u00edc\u00edch se zaji\u0161t\u011bn\u00edm odpov\u00eddaj\u00edc\u00ed kvality \u017eivota v\u0161ech z\u00fa\u010dastn\u011bn\u00fdch. Nem\u00e9n\u011b d\u016fle\u017eit\u00fdm impulzem podporuj\u00edc\u00edm vznik Klubu byla snaha o vytvo\u0159en\u00ed funk\u010dn\u00edho a plnohodnotn\u00e9ho komunika\u010dn\u00edho prost\u0159edku, nejen z d\u016fvodu nav\u00e1z\u00e1n\u00ed intenzivn\u00ed komunikace s l\u00e9ka\u0159i a institucemi, kter\u00e9 zaji\u0161\u0165uj\u00ed l\u00e9\u010debnou p\u00e9\u010di, ale p\u0159edev\u0161\u00edm pro mo\u017enost p\u0159ed\u00e1vat vlastn\u00ed zku\u0161enosti s pr\u016fb\u011bhem l\u00e9\u010dby mezi pacienty a jejich bl\u00edzk\u00fdmi. \u010clenskou z\u00e1kladnu v sou\u010dasn\u00e9 dob\u011b p\u0159edstavuje zhruba 220 \u010dlen\u016f, je tvo\u0159ena p\u0159edev\u0161\u00edm pacienty l\u00e9\u010den\u00fdmi s nemoc\u00ed mnoho\u010detn\u00fd myelom a jejich nejbli\u017e\u0161\u00edmi. D\u00e1le jsou zde zastoupeni lid\u00e9, kte\u0159\u00ed maj\u00ed z\u00e1jem pom\u00e1hat a poskytovat podporu lidem s t\u00edmto vz\u00e1cn\u00fdm onemocn\u011bn\u00edm. Klub pacient\u016f m\u00e1 v\u0161ak ambici nab\u00edzet sv\u00e9 slu\u017eby nejen sv\u00fdm \u010dlen\u016fm, ale v\u0161em pacient\u016fm s mnoho\u010detn\u00fdm myelomem v \u010cR. V\u00edce na: www.mnohocetnymyelom.cz<\/p>\n
O \u010cesk\u00e9 myelomov\u00e9 skupin\u011b<\/p>\n
\u010cesk\u00e1 myelomov\u00e1 skupina (CMG) p\u016fsob\u00ed od roku 1996. V r\u00e1mci sv\u00e9ho posl\u00e1n\u00ed se sna\u017e\u00ed organizovat diagnostick\u00e9 a l\u00e9\u010debn\u00e9 aktivity u mnoho\u010detn\u00e9ho myelomu tak, aby dosahovaly standardn\u00ed sv\u011btov\u00e9 \u00farovn\u011b a p\u0159\u00edslu\u0161n\u00ed odborn\u00edci tak mohli zajistit nemocn\u00fdm v \u010cesk\u00e9 republice optim\u00e1ln\u00ed p\u00e9\u010di a rychlou dostupnost nejperspektivn\u011bj\u0161\u00edch postup\u016f. Pro urychlen\u00ed sv\u00fdch c\u00edl\u016f v podm\u00ednk\u00e1ch \u010cR se CMG rozhodla zalo\u017eit nada\u010dn\u00ed fond (5. 11. 2001), jeho\u017e koordinuj\u00edc\u00edm a zakl\u00e1daj\u00edc\u00edm centrem je Intern\u00ed hematologick\u00e1 a onkologick\u00e1 klinika ve Fakultn\u00ed nemocnici Brno a L\u00e9ka\u0159sk\u00e1 fakulta Masarykovy univerzity Brno. Z\u00e1kladn\u00ed c\u00edle nada\u010dn\u00edho fondu jsou:<\/p>\n
*Podpora v\u00fdzkumu v oblasti mnoho\u010detn\u00e9ho myelomu \u2013 preklinick\u00e9ho i klinick\u00e9ho.<\/p>\n
*Vytv\u00e1\u0159en\u00ed podm\u00ednek pro spolupr\u00e1ci v\u00fdzkumn\u00edk\u016f a l\u00e9ka\u0159\u016f \u010cesk\u00e9 republiky v oblasti mnoho\u010detn\u00e9ho myelomu.<\/p>\n
*Vytv\u00e1\u0159en\u00ed podm\u00ednek pro profesion\u00e1ln\u00ed poskytov\u00e1n\u00ed informac\u00ed nemocn\u00fdm a jejich bl\u00edzk\u00fdm.<\/p>\n
Ve\u0161ker\u00e1 \u010dinnost CMG a jeho nadace jsou zam\u011b\u0159eny na zlep\u0161en\u00ed v\u00fdsledk\u016f l\u00e9\u010dby a sou\u010dasn\u011b kvality \u017eivota nemocn\u00fdch s mnoho\u010detn\u00fdm myelomem v \u010cesk\u00e9 republice.<\/p>\n
tiskov\u00e1 zpr\u00e1va \u010cesk\u00e9 myelomov\u00e9 skupiny<\/p>\n","protected":false},"excerpt":{"rendered":"
Na \u00fater\u00fd 28. \u00fanora 2017 p\u0159ipad\u00e1 Den vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Mezi n\u011b pat\u0159\u00ed tak\u00e9 mnoho\u010detn\u00fd myelom, kter\u00fdm ro\u010dn\u011b onemocn\u00ed 4\u20136 pacient\u016f na 100 000 obyvatel. V […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":19818,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-27360","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\/27360","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=27360"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27360\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/19818"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27360"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27360"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27360"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}