{"id":24744,"date":"2016-03-01T07:17:04","date_gmt":"2016-03-01T06:17:04","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=24744"},"modified":"2016-03-01T07:17:04","modified_gmt":"2016-03-01T06:17:04","slug":"nekterou-ze-vzacnych-nemoci-trpi-na-svete-na-350-milionu-lidi","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=24744","title":{"rendered":"N\u011bkterou ze vz\u00e1cn\u00fdch nemoc\u00ed trp\u00ed na sv\u011bt\u011b na 350 milion\u016f lid\u00ed"},"content":{"rendered":"

Na 350 milion\u016f lid\u00ed ve sv\u011bt\u011b, z toho asi 30 milion\u016f v Evrop\u011b, trp\u00ed n\u011bkterou ze vz\u00e1cn\u00fdch nemoc\u00ed. Dosud jich v\u011bdci popsali asi sedm tis\u00edc. Na v\u011bt\u0161inu z nich neexistuje l\u00e9k, nebo\u0165 jen t\u011b\u017eko se vyv\u00edj\u00ed medikament pro tak m\u00e1lo po\u010detnou skupinu pacient\u016f. <\/strong>
\n
\nilustra\u010dn\u00ed foto: earl \/ MorgueFile<\/p>\n

I proto si sv\u011bt ka\u017ed\u00fd rok posledn\u00ed \u00fanorov\u00fd den p\u0159ipom\u00e1 Sv\u011btov\u00fd den vz\u00e1cn\u00fdch nemoc\u00ed, kter\u00fd letos v p\u0159estupn\u00fd rok p\u0159ipadl i na relativn\u011b vz\u00e1cn\u00e9 datum 29. \u00fanora.<\/p>\n

Podle \u0161pan\u011blsk\u00e9 agentury EFE asi 43 procent lid\u00ed se vz\u00e1cn\u00fdmi nemocemi nem\u00e1 adekv\u00e1tn\u00ed l\u00e9\u010dbu. Ne\u017e se toti\u017e zjist\u00ed, o jakou chorobu jde, n\u011bkte\u0159\u00ed pacienti podstoup\u00ed \u0159adu operac\u00ed, berou mnoho neadekv\u00e1tn\u00edch l\u00e9k\u016f \u010di absolvuj\u00ed des\u00edtky r\u016fzn\u00fdch vy\u0161et\u0159en\u00ed.<\/p>\n

Mezi vz\u00e1cn\u00e1 onemocn\u011bn\u00ed pat\u0159\u00ed nap\u0159\u00edklad i takzvan\u00fd Guillain-Barr\u00e9ho syndrom, jeho\u017e zv\u00fd\u0161en\u00fd v\u00fdskyt zaznamenaly n\u011bkter\u00e9 latinskoamerick\u00e9 zem\u011b v souvislosti s nyn\u011bj\u0161\u00ed epidemi\u00ed viru zika. Tento syndrom postihuje perifern\u00ed nervovou soustavu a projevuje se obrnou svalstva.<\/p>\n

Zn\u00e1m\u011bj\u0161\u00ed je amyotrofick\u00e1 later\u00e1ln\u00ed skler\u00f3za (ALS), kterou trp\u00ed nap\u0159\u00edklad slavn\u00fd britsk\u00fd astrofyzik Stephen Hawking. A\u010d t\u011blo m\u00e1 tot\u00e1ln\u011b ochrnut\u00e9 a nem\u016f\u017ee mluvit, jeho mozek funguje jako m\u00e1lokter\u00fd jin\u00fd. Se sv\u011btem v\u011bdec komunikuje pomoc\u00ed speci\u00e1ln\u011b upraven\u00e9ho po\u010d\u00edta\u010de napojen\u00e9ho na hlasov\u00fd syntetiz\u00e1tor. Na ALS zem\u0159eli v mlad\u00e9m v\u011bku nap\u0159\u00edklad ital\u0161t\u00ed fotbalist\u00e9 Stefano Borgonovo a Gianluca Signorini \u010di expremi\u00e9r Stanislav Gross.<\/p>\n

Eufemick\u00e9 ozna\u010den\u00ed dostala vz\u00e1cn\u00e1 bul\u00f3zn\u00ed epidermol\u00fdza, v \u010de\u0161tin\u011b nemoc mot\u00fdl\u00edch k\u0159\u00eddel, kter\u00e1 se projevuje tvorbou puch\u00fd\u0159\u016f po cel\u00e9m povrchu t\u011bla, ale t\u00e9\u017e uvnit\u0159 t\u011bla na sliznic\u00edch a d\u00fdchac\u00edm \u010di tr\u00e1vic\u00edm \u00fastroj\u00ed.<\/p>\n

Osmdes\u00e1t procent ze vz\u00e1cn\u00fdch chorob je d\u011bdi\u010dn\u00fdch a \u010dasto se projev\u00ed brzy po narozen\u00ed. T\u0159etina d\u011bt\u00ed s takovou chorobou se nedo\u017eije sv\u00fdch p\u00e1t\u00fdch narozenin.<\/p>\n

Mezi vz\u00e1cn\u00e9 choroby se podle evropsk\u00e9 kategorizace \u0159ad\u00ed nemoc, kter\u00e1 postihuje m\u00e9n\u011b ne\u017e p\u011bt osob na 10.000 obyvatel. Nap\u0159\u00edklad ve \u0160pan\u011blsku jsou podle tamn\u00edch zdroj\u016f takov\u00fdch pacient\u016f u\u017e asi t\u0159i miliony, v \u010cR jich je odhadem 20.000 a\u017e 800.000, z toho t\u0159i \u010dtvrtiny jsou d\u011bti. V USA trp\u00ed n\u011bkterou ze vz\u00e1cn\u00fdch nemoc\u00ed 30 milion\u016f lid\u00ed stejn\u011b jako v Evrop\u011b, nap\u0159\u00edklad v Argentin\u011b jich je p\u011bt milion\u016f.<\/p>\n

V odborn\u00e9 literatu\u0159e je takov\u00fdch chorob pops\u00e1no asi sedm tis\u00edc a nov\u00e9 jsou pr\u016fb\u011b\u017en\u011b dopl\u0148ov\u00e1ny. U mnoha z nich je mo\u017en\u00e9 prvn\u00ed p\u0159\u00edznaky zaznamenat ji\u017e p\u0159i narozen\u00ed \u010di v d\u011btstv\u00ed, jako t\u0159eba u spin\u00e1ln\u00ed svalov\u00e9 atrofie, neurofibromat\u00f3zy, chondrodysplazie \u010di Rettova syndromu. Dal\u0161\u00ed se projev\u00ed v dosp\u011blosti, t\u0159eba Huntingtonova choroba, Crohnova nemoc \u010di ALS.<\/p>\n

Sv\u011btov\u00fd den vz\u00e1cn\u00fdch nemoc\u00ed se p\u0159ipom\u00edn\u00e1 od roku 2008 a vyhl\u00e1sila ho Evropsk\u00e1 organizace pro vz\u00e1cn\u00e9 nemoci (EURORDIS).<\/p>\n","protected":false},"excerpt":{"rendered":"

Na 350 milion\u016f lid\u00ed ve sv\u011bt\u011b, z toho asi 30 milion\u016f v Evrop\u011b, trp\u00ed n\u011bkterou ze vz\u00e1cn\u00fdch nemoc\u00ed. Dosud jich v\u011bdci popsali asi sedm tis\u00edc. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14538,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-24744","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\/24744","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=24744"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24744\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14538"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24744"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24744"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24744"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}