{"id":40515,"date":"2023-06-26T10:56:11","date_gmt":"2023-06-26T08:56:11","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=40515"},"modified":"2023-06-26T10:56:18","modified_gmt":"2023-06-26T08:56:18","slug":"lide-se-svalovou-atrofii-maji-narok-jen-na-4-hodiny-pomoci-denne","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=40515","title":{"rendered":"Lid\u00e9 se svalovou atrofi\u00ed maj\u00ed n\u00e1rok jen na 4 hodiny pomoci denn\u011b"},"content":{"rendered":"\n

Odemknout dve\u0159e, pustit vodu z\u00a0kohoutku, vy\u010distit zuby, obl\u00e9ct se, nazout boty, naj\u00edst se nebo vyzvednout l\u00e9ky \u2013 s\u00a0t\u00edm v\u0161\u00edm pot\u0159ebuj\u00ed lid\u00e9 se spin\u00e1ln\u00ed svalovou atrofi\u00ed pomoci. Kv\u016fli nemoci maj\u00ed ochabl\u00e9 svaly a jsou v\u011bt\u0161inou upout\u00e1ni na elektrick\u00fd voz\u00edk, kter\u00fd ovl\u00e1daj\u00ed pouze prsty. Na asistenci, ji\u017e pot\u0159ebuj\u00ed 24 hodin denn\u011b, jim zdravotn\u00ed poji\u0161\u0165ovna p\u0159isp\u00edv\u00e1 \u010d\u00e1stkou, kter\u00e1 pokr\u00fdv\u00e1 jen \u010dty\u0159i hodiny t\u00e9to slu\u017eby denn\u011b. Asociace muskul\u00e1rn\u00edch dystrofik\u016f proto vypsala sb\u00edrku, jej\u00ed\u017e v\u00fdt\u011b\u017eek pou\u017eije na zaplacen\u00ed dal\u0161\u00edch hodin asistence nemocn\u00fdm.<\/strong><\/p>\n\n\n\n

\u201e\u0158ada lid\u00ed nem\u00e1 ochotn\u00e9 p\u0159\u00edbuzn\u00e9 nebo zn\u00e1m\u00e9 a je zcela odk\u00e1z\u00e1na na pomoc placen\u00fdch asistent\u016f. Z pen\u011bz od poji\u0161\u0165ovny si v\u0161ak mohou dovolit pomoc jen omezen\u011b, a asistent k nim proto doch\u00e1z\u00ed pouze na dv\u011b hodiny r\u00e1no a n\u00e1sledn\u011b na dv\u011b hodiny ve\u010der. P\u0159es den si mus\u00ed poradit sami, co\u017e je zcela nemo\u017en\u00e9, kdy\u017e se t\u00e9m\u011b\u0159 nemohou h\u00fdbat. Pacienti posti\u017een\u00ed muskul\u00e1rn\u00ed atrofi\u00ed nav\u00edc pot\u0159ebuj\u00ed p\u00e9\u010di i v noci, kdy by m\u011bli po 3\u20134 hodin\u00e1ch zm\u011bnit v posteli polohu, aby se zabr\u00e1nilo prole\u017eenin\u00e1m. To je n\u011bco, co tak\u00e9 sami nezvl\u00e1dnou,\u201c<\/em> vyjmenov\u00e1v\u00e1 Mgr. Dona Jandov\u00e1, p\u0159edsedkyn\u011b Asociace muskul\u00e1rn\u00edch dystrofik\u016f.<\/p>\n\n\n\n

Pen\u00edze na asistenty proto podle n\u00ed pacienti \u010dasto sh\u00e1n\u011bj\u00ed prost\u0159ednictv\u00edm r\u016fzn\u00fdch nadac\u00ed. N\u011bkter\u00fdm z nich pom\u00e1haj\u00ed rodinn\u00ed p\u0159\u00edslu\u0161n\u00edci nebo p\u0159\u00e1tel\u00e9, \u0159ada pacient\u016f ale takov\u00e9 \u0161t\u011bst\u00ed nem\u00e1. Obecn\u011b hor\u0161\u00ed situace je podle Dony Jandov\u00e9 mimo v\u011bt\u0161\u00ed m\u011bsta, kde chyb\u00ed dostate\u010dn\u00e9 mno\u017estv\u00ed asistent\u016f. \u201eKraj m\u00e1 povinnost tuto slu\u017ebu ve sv\u00e9m regionu zav\u00e9st, pokud tam nen\u00ed z\u0159\u00edzena. Jde ale o velmi n\u00e1ro\u010dnou pr\u00e1ci, a proto se tu lid\u00e9 sh\u00e1n\u00ed obt\u00ed\u017en\u011b \u2013 i kdy\u017e nen\u00ed pot\u0159eba m\u00edt \u017e\u00e1dn\u00e9 speci\u00e1ln\u00ed vzd\u011bl\u00e1n\u00ed,\u201c<\/em> vysv\u011btluje Mgr. Jandov\u00e1. Pro pacienty se SMA neexistuj\u00ed ani speci\u00e1ln\u00ed za\u0159\u00edzen\u00ed, kde by se jim dost\u00e1valo pot\u0159ebn\u00e9 p\u00e9\u010de.<\/p>\n\n\n\n

V\u00a0\u010cesk\u00e9 republice \u017eije asi 250 lid\u00ed s\u00a0t\u00edmto onemocn\u011bn\u00edm. P\u0159ibli\u017en\u011b polovinu z\u00a0nich tvo\u0159\u00ed d\u011bti. L\u00e9ka\u0159i rozli\u0161uj\u00ed \u010dty\u0159i typy onemocn\u011bn\u00ed podle toho, v\u00a0jak\u00e9m v\u011bku nemoc propukla. \u201eU ka\u017ed\u00e9ho ze \u010dty\u0159 typ\u016f doch\u00e1z\u00ed k\u00a0postupn\u00e9mu ochabov\u00e1n\u00ed sval\u016f, kv\u016fli n\u011bmu\u017e pacienti p\u0159ich\u00e1zej\u00ed o svoji hybnost. Za\u010d\u00edn\u00e1 to svalstvem horn\u00edch a doln\u00edch kon\u010detin, postupn\u011b pak nemoc napad\u00e1 v\u0161echny kostern\u00ed svaly,\u201c<\/em> dod\u00e1v\u00e1 MUDr. Stanislav Voh\u00e1\u0148ka, CSc., MBA, prim\u00e1\u0159 Neurologick\u00e9 kliniky L\u00e9ka\u0159sk\u00e9 fakulty Masarykovy univerzity a Fakultn\u00ed nemocnice Brno. V\u00a0pokro\u010dil\u00e9 f\u00e1zi nemoci pot\u0159ebuj\u00ed pacienti tak\u00e9 dechovou podporu. Sami v\u0161ak nejsou schopni obsluhovat speci\u00e1ln\u00ed dechov\u00e9 p\u0159\u00edstroje, kter\u00e9 je t\u0159eba pravideln\u011b \u010distit a ods\u00e1vat. Krom\u011b pomoci s\u00a0b\u011b\u017en\u00fdmi denn\u00edmi \u010dinnostmi pot\u0159ebuj\u00ed pacienti tak\u00e9 pravideln\u011b polohovat, protahovat a rehabilitovat. Bez asistence se neobejdou ani p\u0159i n\u00e1v\u0161t\u011bv\u011b l\u00e9ka\u0159e, kam mnoz\u00ed p\u0159ich\u00e1zej\u00ed mimo jin\u00e9 i pro pravidelnou d\u00e1vku l\u00e9ku, kter\u00fd brzd\u00ed dal\u0161\u00ed postup nemoci.

\u201eZa posledn\u00edch p\u011bt let jsme v\u00a0l\u00e9\u010db\u011b spin\u00e1ln\u00ed svalov\u00e9 atrofie v\u00fdznamn\u011b pokro\u010dili. Dnes jsou k\u00a0dispozici t\u0159i l\u00e9\u010div\u00e9 p\u0159\u00edpravky, kter\u00e9 ji um\u00ed zastavit. Pokud tedy zah\u00e1j\u00edme l\u00e9\u010dbu u d\u00edt\u011bte, u kter\u00e9ho se je\u0161t\u011b nesta\u010dily projevit prvn\u00ed p\u0159\u00edznaky, existuje velk\u00e1 pravd\u011bpodobnost, \u017ee bude \u017e\u00edt norm\u00e1ln\u00ed \u017eivot,\u201c<\/em> dod\u00e1v\u00e1 doc. MUDr. Jana Haberlov\u00e1, Ph.D., prim\u00e1\u0159ka\u00a0Kliniky d\u011btsk\u00e9 neurologie 2. l\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy a Fakultn\u00ed nemocnice Motol. L\u00e9\u010dbu mohou vyu\u017e\u00edt i pacienti v\u00a0pokro\u010dil\u00fdch f\u00e1z\u00edch nemoci \u2013 hybnost ji\u017e zp\u00e1tky nevr\u00e1t\u00ed, ale l\u00e9k zvl\u00e1dne zastavit dal\u0161\u00ed postup a alespo\u0148 m\u00edrn\u011b jejich stav zlep\u0161it. \u201ePr\u00e1v\u011b te\u010f prob\u00edh\u00e1 pilotn\u00ed projekt novorozeneck\u00e9ho screeningu, kdy z kapky krve zji\u0161\u0165ujeme p\u0159\u00edtomnost genetick\u00e9 poruchy prozrazuj\u00edc\u00ed nemoc. P\u0159edpokl\u00e1d\u00e1me, \u017ee od p\u0159\u00ed\u0161t\u00edho ledna se stane automatickou sou\u010d\u00e1st\u00ed standardn\u00edho programu novorozeneck\u00e9ho screningu,\u201c<\/em> dopl\u0148uje doc. Haberlov\u00e1.

V\u00edce informac\u00ed o tom, jak se zapojit do sb\u00edrky na osobn\u00ed asistenty, je na webu www.amd-mda.cz<\/a>. P\u0159\u00edsp\u011bvky mohou lid\u00e9 pos\u00edlat na transparentn\u00ed \u00fa\u010det Asociace muskul\u00e1rn\u00edch dystrofik\u016f v\u00a0\u010cR 4045780379\/0800.<\/p>\n\n\n\n

Asociace muskul\u00e1rn\u00edch dystrofik\u016f v \u010cR<\/strong><\/p>\n\n\n\n

<\/a> Asociace muskul\u00e1rn\u00edch dystrofik\u016f je pacientsk\u00e1 organizace, kter\u00e1 sdru\u017euje osoby se svalovou dystrofi\u00ed a jin\u00fdmi nervosvalov\u00fdmi onemocn\u011bn\u00edmi, jejich rodinn\u00e9 p\u0159\u00edslu\u0161n\u00edky, p\u0159\u00e1tele a podporovatele. Dlouhodob\u011b pracuje na zkvalitn\u011bn\u00ed a zp\u0159\u00edstupn\u011bn\u00ed p\u00e9\u010de pro v\u0161echny nemocn\u00e9, kte\u0159\u00ed ji pot\u0159ebuj\u00ed. Organizace po\u0159\u00e1d\u00e1 pro sv\u00e9 \u010dleny rehabilita\u010dn\u00ed kurzy, rekondi\u010dn\u00ed ozdravn\u00e9 pobyty, ale tak\u00e9 semin\u00e1\u0159e nebo nap\u0159\u00edklad \u0161achov\u00e9 turnaje. Sv\u00fdm \u010dlen\u016fm poskytuje soci\u00e1ln\u011bpr\u00e1vn\u00ed poradenstv\u00ed. V\u00edce o organizaci a vypsan\u00e9 sb\u00edrce na osobn\u00ed asistenty najdete na webu www.amd-mda.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Odemknout dve\u0159e, pustit vodu z\u00a0kohoutku, vy\u010distit zuby, obl\u00e9ct se, nazout boty, naj\u00edst se nebo vyzvednout l\u00e9ky \u2013 s\u00a0t\u00edm v\u0161\u00edm pot\u0159ebuj\u00ed lid\u00e9 se spin\u00e1ln\u00ed svalovou atrofi\u00ed […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":1457,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-40515","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\/40515","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=40515"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40515\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/1457"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40515"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40515"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40515"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}