Marek Gronych a Yveta Seipeltov\u00e1 \u017eij\u00ed spole\u010dn\u011b ji\u017e p\u00e1t\u00fdm rokem na Jesenicku. Od za\u010d\u00e1tku v\u011bd\u011bli, \u017ee spolu cht\u011bj\u00ed z\u016fstat a jednou zalo\u017eit rodinu. M\u00edsto toho bylo Markovi ned\u00e1vno diagnostikov\u00e1no d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed MEN1, kter\u00e9 nejde vyl\u00e9\u010dit. Lze mu pouze prodlu\u017eovat \u017eivot. Na nemoc zpo\u010d\u00e1tku upozor\u0148ovaly ob\u010dasn\u00e9 bolesti b\u0159icha a nechutenstv\u00ed.<\/p>\n\n\n\n
Nen\u00e1padn\u00e9 zdravotn\u00ed pot\u00ed\u017ee dnes osmat\u0159icetilet\u00e9ho Marka Gronycha, kter\u00e9 zpo\u010d\u00e1tku nep\u016fsobily nijak v\u00fdjime\u010dn\u011b, se postupn\u011b uk\u00e1zaly jako prvn\u00ed sign\u00e1l vz\u00e1cn\u00e9ho genetick\u00e9ho onemocn\u011bn\u00ed MEN1 (viz n\u00ed\u017ee). P\u0159i n\u011bm se tvo\u0159\u00ed n\u00e1dory v hormon\u00e1ln\u00edch \u017el\u00e1z\u00e1ch a v sou\u010dasn\u00e9 dob\u011b jej nelze l\u00e9\u010dit.<\/p>\n\n\n\n
Marka, kter\u00fd s partnerkou Yvetou Seipeltovou \u017eije na Jesenicku, postihlo onemocn\u011bn\u00ed v pln\u00e9 s\u00edle \u2013 diagnostikov\u00e1no mu bylo ve v\u011bku 32 let. Dnes je Marek v p\u00e9\u010di specialist\u016f a jeho \u017eivot se \u0159\u00edd\u00ed p\u0159\u00edsn\u00fdm re\u017eimem l\u00e9\u010dby. Jak s\u00e1m \u0159\u00edk\u00e1, nejde ani tak o \u00fapln\u00e9 uzdraven\u00ed, jako o \u010das a kvalitu zb\u00fdvaj\u00edc\u00edho \u017eivota.<\/p>\n\n\n\n
Nen\u00e1padn\u00e9 za\u010d\u00e1tky a prvn\u00ed varov\u00e1n\u00ed<\/p>\n\n\n\n
Jak Den\u00edku popsala Markova p\u0159\u00edtelkyn\u011b, v\u0161e za\u010dalo pozvolna. Nic zpo\u010d\u00e1tku nenasv\u011bd\u010dovalo tomu, \u017ee by mohl jej\u00ed partner trp\u011bt tak z\u00e1va\u017enou diagn\u00f3zou.<\/p>\n\n\n\n
\u201eU Marka se d\u0159\u00edve objevovaly nen\u00e1padn\u00e9 zdravotn\u00ed obt\u00ed\u017ee, se kter\u00fdmi se ob\u010das pot\u00fdk\u00e1 \u00fapln\u011b ka\u017ed\u00fd. \u0160lo nap\u0159\u00edklad o opakovan\u00e9 bolesti b\u0159icha, tr\u00e1vic\u00ed pot\u00ed\u017ee a pozd\u011bji i zhor\u0161ov\u00e1n\u00ed fyzick\u00e9 kondice,\u201c vysv\u011btlila Yveta Seipeltov\u00e1.<\/p>\n\n\n\n
Zlom p\u0159i\u0161el v roce 2018, kdy Markovi n\u00e1hle prasklo tenk\u00e9 st\u0159evo. N\u00e1sledovala akutn\u00ed operace. O rok pozd\u011bji znovu bojoval prakticky o \u017eivot, kdy\u017e u n\u011bj do\u0161lo k ucp\u00e1n\u00ed c\u00e9vy v t\u0159\u00edsle a n\u00e1sledn\u00e9mu krv\u00e1cen\u00ed do dutiny b\u0159i\u0161n\u00ed.<\/p>\n\n\n\n
\u201eSituace byla natolik v\u00e1\u017en\u00e1, \u017ee byl transportov\u00e1n vrtuln\u00edkem do Fakultn\u00ed nemocnice Olomouc,\u201c pokra\u010duje Markova p\u0159\u00edtelkyn\u011b.<\/p>\n\n\n\n
Definitivn\u00ed diagn\u00f3za: genetick\u00fd syndrom MEN1<\/p>\n\n\n\n
Dramatick\u00e9 ud\u00e1losti odstartovaly s\u00e9rii podrobn\u00fdch vy\u0161et\u0159en\u00ed a dlouhodob\u00e9 sledov\u00e1n\u00ed Markova stavu. Odpov\u011b\u010f p\u0159i\u0161la a\u017e v roce 2021, kdy l\u00e9ka\u0159i stanovili diagn\u00f3zu: syndrom MEN1. Jedn\u00e1 se o vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 zp\u016fsobuje vznik n\u00e1dor\u016f v hormon\u00e1ln\u011b aktivn\u00edch org\u00e1nech.<\/p>\n\n\n\n
\u201eToto onemocn\u011bn\u00ed nej\u010dast\u011bji postihuje p\u0159\u00ed\u0161t\u00edtn\u00e1 t\u011bl\u00edska (\u010dty\u0159i drobn\u00e9 \u017el\u00e1zy ulo\u017een\u00e9 na zadn\u00ed stran\u011b \u0161t\u00edtn\u00e9 \u017el\u00e1zy; pozn. red.), slinivku b\u0159i\u0161n\u00ed a podv\u011bsek mozkov\u00fd. U Marka jsou bohu\u017eel zasa\u017eeny v\u0161echny t\u0159i org\u00e1ny. P\u0159\u00ed\u0161t\u00edtn\u00e1 t\u011bl\u00edska mu byla chirurgicky odstran\u011bna, stejn\u011b jako pozd\u011bji cel\u00e1 slinivka b\u0159i\u0161n\u00ed,\u201c pokra\u010duje Markova partnerka.<\/p>\n\n\n\n
Jak d\u00e1le vypov\u011bd\u011bla, v tuto chv\u00edli je onemocn\u011bn\u00ed jej\u00edho partnera hodnoceno jako pokro\u010dil\u00e9 s metastatick\u00fdm posti\u017een\u00edm lymfatick\u00fdch uzlin. Podv\u011bsek mozkov\u00fd je rovn\u011b\u017e posti\u017een, jeho stav je v\u0161ak zat\u00edm stabilizov\u00e1n pomoc\u00ed l\u00e9\u010dby. Marek je sledov\u00e1n na onkologick\u00e9m pracovi\u0161ti Fakultn\u00ed nemocnice Olomouc.<\/p>\n\n\n\n
\u201eC\u00edlem l\u00e9\u010dby je zpomalit postup nemoci, stabilizovat zdravotn\u00ed stav a co nejd\u00e9le udr\u017eet kvalitu \u017eivota. Konkr\u00e9tn\u00ed \u010dasov\u00fd horizont do\u017eit\u00ed l\u00e9ka\u0159i bohu\u017eel nedok\u00e1\u017eou p\u0159esn\u011b ur\u010dit. U ka\u017ed\u00e9ho pacienta se nemoc vyv\u00edj\u00ed individu\u00e1ln\u011b,\u201c dod\u00e1v\u00e1 Yveta Seipeltov\u00e1.<\/p>\n\n\n\n
\u017divot bez slinivky<\/p>\n\n\n\n
Po odstran\u011bn\u00ed cel\u00e9 slinivky ji\u017e nen\u00ed Markovo t\u011blo schopno vytv\u00e1\u0159et inzulin ani tr\u00e1vic\u00ed enzymy. To dle v\u00fdpov\u011bdi jeho partnerky v praxi znamen\u00e1, \u017ee si mus\u00ed ka\u017ed\u00fd den p\u0159esn\u011b vyva\u017eovat d\u00e1vky inzulinu podle p\u0159\u00edjmu potravy a aktu\u00e1ln\u00ed hladiny cukru v krvi. Z\u00e1rove\u0148 u\u017e\u00edv\u00e1 tr\u00e1vic\u00ed enzymy.<\/p>\n\n\n\n
\u201e\u010casto doch\u00e1z\u00ed k v\u00fdkyv\u016fm hladiny cukru. Hypoglykemie (nebezpe\u010dn\u011b n\u00edzk\u00e1 hladina cukru v krvi; pozn. red.) \u010di hyperglykemie (opak hypoglykemie) mohou p\u0159ij\u00edt i p\u0159es ve\u0161kerou snahu o kontrolu. Tyto stavy jsou vy\u010derp\u00e1vaj\u00edc\u00ed a mohou b\u00fdt nebezpe\u010dn\u00e9,\u201c vysv\u011btluje Markova partnerka.<\/p>\n\n\n\n
K tomu se p\u0159id\u00e1v\u00e1 celkov\u00e1 \u00fanava, oslaben\u00ed organismu a psychick\u00e1 z\u00e1t\u011b\u017e spojen\u00e1 s nejistotou dal\u0161\u00edho v\u00fdvoje nemoci. Kv\u016fli onemocn\u011bn\u00ed musel Marek p\u0159estat vykon\u00e1vat i sv\u00e9 povol\u00e1n\u00ed \u0159idi\u010de mezin\u00e1rodn\u00ed kamionov\u00e9 dopravy. Nyn\u00ed se sna\u017e\u00ed naplno soust\u0159edit na stabilizaci sv\u00e9ho zdravotn\u00edho stavu.<\/p>\n\n\n\n
\u0160ance \u017e\u00edt d\u016fstojn\u011b<\/p>\n\n\n\n
Marek se nevzd\u00e1v\u00e1 a sna\u017e\u00ed se \u017e\u00edt co nejplnohodnotn\u011bji, i kdy\u017e v\u00ed, \u017ee ho bude nemoc prov\u00e1zet po zbytek \u017eivota. Aby mohl \u017e\u00edt co nejd\u00e9le d\u016fstojn\u00fd \u017eivot, zalo\u017eila pro n\u011bj jeho partnerka sb\u00edrku na dobro\u010dinn\u00e9 platform\u011b Donio: https:\/\/donio.cz\/podpora-lecby-a-zivota-se-syndromem-men1<\/a>.<\/p>\n\n\n\n Vybran\u00e9 pen\u00edze maj\u00ed pomoci s \u00fahradou n\u00e1klad\u016f na l\u00e9\u010dbu a chystan\u00e9 onkologick\u00e9 terapie, na kter\u00e9 nep\u0159isp\u00edv\u00e1 zdravotn\u00ed poji\u0161\u0165ovna. D\u00e1le budou vyu\u017eity na l\u00e9ky \u010di zdravotnick\u00e9 pom\u016fcky. P\u0159\u00edsp\u011bvky budou pou\u017eity i na pokryt\u00ed dopravn\u00edch n\u00e1klad\u016f souvisej\u00edc\u00edch s \u010dast\u00fdmi cestami k l\u00e9ka\u0159\u016fm, na l\u00e1ze\u0148sk\u00e9 rehabilitace a v\u00fddaje spojen\u00e9 s b\u011b\u017en\u00fdm chodem dom\u00e1cnosti.<\/p>\n\n\n\n \u201eNe\u017e\u00e1d\u00e1me o z\u00e1zrak. Jen o \u0161anci \u017e\u00edt d\u016fstojn\u011b s nemoc\u00ed, kterou si Marek nevybral,\u201c pod\u011bkovala Markova p\u0159\u00edtelkyn\u011b a zakladatelka sb\u00edrky v\u0161em, kte\u0159\u00ed se rozhodnou pomoci.<\/p>\n\n\n\n Co je to syndrom MEN1<\/p>\n\n\n\n Syndrom MEN1, neboli mnoho\u010detn\u00e1 endokrinn\u00ed neoplazie typ 1, je podle l\u00e9ka\u0159\u016f z Masarykova onkologick\u00e9ho \u00fastavu vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed, p\u0159i kter\u00e9m se v t\u011ble tvo\u0159\u00ed n\u00e1dory v n\u011bkolika hormon\u00e1ln\u00edch \u017el\u00e1z\u00e1ch sou\u010dasn\u011b.<\/p>\n\n\n\n Nej\u010dast\u011bji postihuje p\u0159\u00ed\u0161t\u00edtn\u00e1 t\u011bl\u00edska, slinivku b\u0159i\u0161n\u00ed a podv\u011bsek mozkov\u00fd (hypof\u00fdzu).<\/p>\n\n\n\n Tyto n\u00e1dory b\u00fdvaj\u00ed v\u011bt\u0161inou nezhoubn\u00e9, ale mohou v\u00e9st ke zdravotn\u00edm pot\u00ed\u017e\u00edm, jako jsou \u017ealude\u010dn\u00ed v\u0159edy, opakovan\u00e9 n\u00edzk\u00e9 hladiny cukru v krvi, poruchy zraku, bolesti hlavy nebo zm\u011bny t\u011blesn\u00e9ho vzhledu.<\/p>\n\n\n\n Kate\u0159ina Kofro\u0148ov\u00e1<\/p>\n\n\n\n Den\u00edk.cz<\/p>\n\n\n\n https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Marek Gronych a Yveta Seipeltov\u00e1 \u017eij\u00ed spole\u010dn\u011b ji\u017e p\u00e1t\u00fdm rokem na Jesenicku. Od za\u010d\u00e1tku v\u011bd\u011bli, \u017ee spolu cht\u011bj\u00ed z\u016fstat a jednou zalo\u017eit rodinu. M\u00edsto toho […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":18247,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-63196","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\/63196","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=63196"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63196\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/18247"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=63196"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63196"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63196"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}