{"id":37777,"date":"2024-01-23T11:13:31","date_gmt":"2024-01-23T10:13:31","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/?p=37777"},"modified":"2026-09-16T12:26:36","modified_gmt":"2026-09-16T11:26:36","slug":"kuba-dravetsyndroom","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/nl\/kuba-dravetsyndroom\/","title":{"rendered":"Kuba is een 8-jarige jongen die lijdt aan het Dravetsyndroom"},"content":{"rendered":"\n<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_0 et_pb_row et_block_row\"><div class=\"et_pb_column_0 et_pb_column et_pb_column_2_3 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module\"><div class=\"et_pb_text_inner\"><p><span style=\"font-weight: 400;\">Kuba's komst op de wereld was moeilijk, de dokters moesten hem beademen en al als baby van 6 weken kreeg hij zijn eerste epileptische aanval. Dit werd gevolgd door een aantal weken ziekenhuisopname, waar hij een groot aantal zeer moeilijke onderzoeken onderging. Na nog veel meer langdurige aanvallen bevestigde een genetische test met 9 maanden het Dravetsyndroom, ook wel bekend als \"catastrofale\" epilepsie. Het is een zeldzame en zeer ernstige vorm van hardnekkige medicijn resistente epilepsie, die gepaard gaat met andere problemen en diagnoses.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Kuba lijdt onder andere aan atypisch autisme, matige mentale retardatie met aanzienlijke gedragsstoornissen, hyperactiviteit, co\u00f6rdinatie- en mobiliteitsproblemen. Hij heeft ook hypotonie, ataxie, hypermobiliteit, kyfose, cerebellair syndroom en een visuele beperking. Dit alles bij elkaar betekent dat Kuba volledig immobiel is en de hele dag afhankelijk is van de hulp van zijn moeder. Helaas kunnen aanvallen zelfs worden uitgelokt door vreugde, opwinding, bijvoorbeeld vermoeidheid, een verandering in omgeving, maar ook warm weer of gewoon een plotselinge verandering in temperatuur.<\/span><\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_1 et_pb_column et_pb_column_1_3 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_0 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small.jpg\" width=\"640\" height=\"640\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small.jpg 640w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small-480x480.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 640px, 100vw\" class=\"wp-image-37739\" title=\"NightWatch-Story_Kuba_1_small\" \/><\/span><\/div><\/div><\/div><\/div><div class=\"et_pb_section_1 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_1 et_pb_row et_pb_row_1-4_1-2_1-4 et_block_row et_block_row_1-4_1-2_1-4\"><div class=\"et_pb_column_2 et_pb_column et_pb_column_1_4 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big.jpg\" width=\"720\" height=\"1280\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big.jpg 720w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big-480x853.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 720px, 100vw\" class=\"wp-image-37784\" title=\"NightWatch-Story_Kuba_2_big\" \/><\/span><\/div><\/div><div class=\"et_pb_column_3 et_pb_column et_pb_column_1_2 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module\"><div class=\"et_pb_text_inner\"><p><span style=\"font-weight: 400;\">Het is dus noodzakelijk om een zeer strikt regime te volgen - hij moet in alles zeer beperkt en gereguleerd zijn, hij mag niet rennen, springen of te blij of boos worden, hij mag in de zomer niet naar buiten bij hoge temperaturen en in de zon, en dit alles belemmert zijn ontwikkeling. Hij kan zich niet vermaken zoals andere gezonde kinderen in de speeltuin. Hij kan niet in het zwembad gaan, hij kan niet te enthousiast zijn, bijvoorbeeld zelfs niet met Kerstmis als hij cadeautjes openmaakt... dit alles kan hem een epileptische aanval bezorgen.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Daarnaast lopen pati\u00ebnten met het Dravetsyndroom een extreem hoog risico op SUDEP <\/span><span style=\"font-weight: 400;\">\u00a0(Sudden Unexpected Death in Epilepsy)<\/span><span style=\"font-weight: 400;\">, dat is plotselinge en onverwachte dood bij een pati\u00ebnt met epilepsie en daarom moeten hun vitale functies worden bewaakt. Kuba kan Nightwatch gebruiken om epilepsieaanvallen tijdens de slaap te monitoren. <\/span><span style=\"font-weight: 400;\">Met NightWatch kunnen zijn ouders rustig slapen zonder zich zorgen te hoeven maken over Kuba's gezondheid en hoeven ze hem niet de hele tijd in de gaten te houden, zodat ze meer energie hebben voor de dagelijkse zorg voor hem.<\/span><\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_4 et_pb_column et_pb_column_1_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_2 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big.jpg\" width=\"720\" height=\"1280\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big.jpg 720w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big-480x853.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 720px, 100vw\" class=\"wp-image-37790\" title=\"NightWatch-Story_Kuba_3_big\" \/><\/span><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Kuba&#8217;s komst op de wereld was moeilijk, de dokters moesten hem beademen en al als baby van 6 weken kreeg hij zijn eerste epileptische aanval.<\/p>\n","protected":false},"author":3,"featured_media":37740,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[],"class_list":["post-37777","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nightwatch-verhalen"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Kuba 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