{"id":2919,"date":"2026-04-29T12:20:47","date_gmt":"2026-04-29T10:20:47","guid":{"rendered":"https:\/\/cfnorge.no\/?p=2919"},"modified":"2026-04-29T14:22:29","modified_gmt":"2026-04-29T12:22:29","slug":"hans-21-lop-bergen-city-marathon-for-nfcf-jeg-onsker-a-motivere-andre-med-cf","status":"publish","type":"post","link":"https:\/\/cfnorge.no\/en\/hans-21-lop-bergen-city-marathon-for-nfcf-jeg-onsker-a-motivere-andre-med-cf\/","title":{"rendered":"Hans (21) l\u00f8p Bergen City Marathon for NFCF: \u00abJeg \u00f8nsker \u00e5 motivere andre med CF\u00bb"},"content":{"rendered":"<p>[et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; custom_margin=&raquo;0px||||false|false&raquo; custom_padding=&raquo;0px||1px||false|false&raquo; global_colors_info=&raquo;{%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22background_color%22%93}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; max_width=&raquo;900px&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_button button_url=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI1NSJ9fQ==@&raquo; button_text=&raquo;Tilbake&raquo; _builder_version=&raquo;4.21.0&#8243; _dynamic_attributes=&raquo;button_url&raquo; _module_preset=&raquo;default&raquo; custom_button=&raquo;on&raquo; button_text_size=&raquo;18px&raquo; button_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; button_bg_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_width=&raquo;0px&raquo; button_border_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_radius=&raquo;0px&raquo; button_font=&raquo;Poppins||||||||&raquo; button_icon=&raquo;&#x23;||divi||400&#8243; button_icon_placement=&raquo;left&raquo; button_on_hover=&raquo;off&raquo; custom_margin=&raquo;||20px||false|false&raquo; custom_padding=&raquo;||||false|false&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22button_text_color%22%93,%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22button_border_color%22,%22button_bg_color%22%93}&raquo;][\/et_pb_button][et_pb_image src=&raquo;https:\/\/cfnorge.no\/wp-content\/uploads\/2026\/04\/Hans.jpeg&raquo; title_text=&raquo;Hans&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; header_font=&raquo;Poppins|600|||||||&raquo; header_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; custom_margin=&raquo;0px||0px||false|false&raquo; custom_padding=&raquo;0px||0px||false|false&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22header_text_color%22%93}&raquo;]<\/p>\n<h1 class=\"article-headline\">Hans (21) l\u00f8p Bergen City Marathon for NFCF: \u00abJeg \u00f8nsker \u00e5 motivere andre med CF\u00bb<\/h1>\n<p>[\/et_pb_text][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;18px&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; header_2_font_size=&raquo;18px&raquo; header_2_line_height=&raquo;1.4em&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22,%22header_2_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22link_text_color%22%93}&raquo;]<\/p>\n<p><em>Da Hans Hermansen Sulejewski krysset m\u00e5llinjen i Bergen City Marathon, var det mer enn et personlig m\u00e5l som ble oppfylt. Det var ogs\u00e5 med et sterkt \u00f8nske om \u00e5 v\u00e6re et forbilde og motivere andre.<\/em><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;18px&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22link_text_color%22%93}&raquo;]<\/p>\n<p><strong>Moitvasjon og viljestyrke<\/strong><\/p>\n<p><span>Hans er 21 \u00e5r og f\u00f8dt med cystisk fibrose. Han begynte \u00e5 l\u00f8pe i september 2025 og satte seg et ambisi\u00f8st m\u00e5l for \u00e5 ha noe konkret \u00e5 jobbe systematisk mot. Han s\u00f8kte om st\u00f8tte fra foreningen og mottok midler gjennom Ekstra Gode Dager i forkant av l\u00f8pet.<\/span><\/p>\n<p><span> Selv om Bergen City Marathon var hans f\u00f8rste maraton, fullf\u00f8rte han det p\u00e5 3 timer, 32 minutter og 48 sekunder, en imponerende prestasjon! Det er likevel ikke bare tiden som motiverer ham:\u00a0<\/span><\/p>\n<blockquote>\n<p><em>\u00abJeg motiveres av muligheten til \u00e5 v\u00e6re et forbilde og inspirere andre med CF til \u00e5 v\u00e6re fysisk aktive \u2013 aktivitet spiller en sentral rolle i h\u00e5ndteringen av sykdommen.\u00bb<\/em><\/p>\n<\/blockquote>\n<p>Regelmessig fysisk aktivitet er en viktig del av \u00e5 leve godt med CF, men oppkj\u00f8ringen var ikke uten hindringer. Som mange med CF opplevde Hans perioder der kroppen ikke spilte helt p\u00e5 lag, og han m\u00e5tte h\u00e5ndtere sykdom underveis i treningsperioden. Men han sto i det, og sier selv at det bare styrket viljen til \u00e5 gjennomf\u00f8re.<\/p>\n<div class=\"pullquote\">\n<blockquote>\n<p>\u00abJeg \u00f8nsker \u00e5 synliggj\u00f8re NFCF og vise at det er mulig \u00e5 sette seg store m\u00e5l, ogs\u00e5 med cystisk fibrose.\u00bb<\/p>\n<\/blockquote>\n<p class=\"section-head\"><strong>NFCF \u2013 et fellesskap gjennom hele livet<\/strong><\/p>\n<p>Hans har v\u00e6rt medlem av NFCF siden 2005, og foreningen har fulgt ham gjennom oppveksten og betydd mye, b\u00e5de for ham og familien \u2013 som en kilde til informasjon, trygghet og fellesskap. At han n\u00e5 kan gi noe tilbake ved \u00e5 l\u00f8pe synlig for foreningen, er noe han setter stor pris p\u00e5.<\/p>\n<blockquote>\n<p><span>\u00abSt\u00f8tten fra NFCF har betydd mye, b\u00e5de praktisk og mentalt. Det \u00e5 vite at jeg l\u00f8p med en st\u00f8rre hensikt og kunne bidra til \u00e5 sette fokus p\u00e5 CF, ga en ekstra dimensjon gjennom hele prosessen.\u00bb<\/span><\/p>\n<p>&nbsp;<\/p>\n<\/blockquote>\n<p>Vi i NFCF er stolte av Hans og takknemlige for at han ville l\u00f8pe for oss.\u00a0<\/p>\n<h1 class=\"entry-title\">\ud83d\udc99<\/h1>\n<p><span><\/span><\/p>\n<\/div>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_padding=&raquo;0px|||||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_row column_structure=&raquo;1_2,1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_image src=&raquo;https:\/\/cfnorge.no\/wp-content\/uploads\/2026\/04\/Hans-2.jpeg&raquo; title_text=&raquo;Hans 2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_image src=&raquo;https:\/\/cfnorge.no\/wp-content\/uploads\/2026\/04\/hans3.jpeg&raquo; title_text=&raquo;hans3&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Ole Vestavik er far til to barn med cystisk fibrose og har v\u00e6rt med i Norsk Forening for Cystisk Fibrose helt fra starten i 1976. I denne teksten deler han fra sine erfaringer om hverdagslivets utfordringer, de store kampene for rettigheter, fremskrittene i behandlingen og gleden over fellesskapet gjennom mer enn 50 \u00e5r.<\/p>","protected":false},"author":6,"featured_media":2924,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<p>[et_pb_section fb_built=\"1\" _builder_version=\"4.21.0\" _module_preset=\"default\" background_color=\"gcid-9e2f3af2-1007-4221-b250-8e35d98c5991\" custom_margin=\"0px||||false|false\" custom_padding=\"0px||||false|false\" global_colors_info=\"{%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22background_color%22%93}\"][et_pb_row _builder_version=\"4.21.0\" _module_preset=\"default\" max_width=\"900px\" global_colors_info=\"{}\"][et_pb_column type=\"4_4\" _builder_version=\"4.21.0\" _module_preset=\"default\" global_colors_info=\"{}\"][et_pb_image src=\"https:\/\/corecontent2023.wpcomstaging.com\/wp-content\/uploads\/2023\/08\/Nettside-FDA-godkjent-Kaftrio-2-5-ar.jpeg\" title_text=\"Nettside-FDA-godkjent-Kaftrio-2-5-ar\" _builder_version=\"4.21.0\" _module_preset=\"default\" global_colors_info=\"{}\"][\/et_pb_image][et_pb_post_title meta=\"off\" featured_image=\"off\" _builder_version=\"4.21.0\" _module_preset=\"default\" title_text_color=\"gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24\" title_font_size=\"35px\" global_colors_info=\"{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22title_text_color%22%93}\"][\/et_pb_post_title][et_pb_text _builder_version=\"4.21.0\" _module_preset=\"default\" text_font=\"Poppins|300|||||||\" text_text_color=\"gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24\" link_font=\"Poppins|500|||||||\" link_text_color=\"gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05\" global_colors_info=\"{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22link_text_color%22%93}\"]<\/p><p>Amerikanske legemiddelmyndigheter har n\u00e5 godkjent CF-medisinen Kaftrio for aldersgruppen 2-5 \u00e5r, og som har minst \u00e9n F508del-mutasjon, eller som har vist effekt i laboratoriefors\u00f8k (in vitro). Produsent Vertex har en lignende s\u00f8knad for samme aldersgruppe inne hos europeiske legemiddelmyndigheter. Kaftrio er en CFTR-modulator, ogs\u00e5 kalt \u00e5rsaksbehandling, for cystisk fibrose. Per idag er den i Norge godkjent til bruk fra 6 \u00e5r og oppover for de som har minst \u00e9n F508del-mutasjon.<\/p><p>\u00a0<\/p><p>Det er i en\u00a0<a title=\"Pressemelding fra Vertex 24. april 2023\" href=\"https:\/\/investors.vrtx.com\/news-releases\/news-release-details\/vertex-announces-us-fda-approval-trikaftar-0\" target=\"_blank\" rel=\"noopener\">pressemelding<\/a>\u00a0at produsent Vertex forteller om den nye godkjenningen. Den amerikanske versjonen av Kaftrio heter Trikafta. Kaftrio\/Trikafta best\u00e5r av virkestoffene ivacaftor, tezacaftor og elexacaftor.<\/p><p>\u00a0<\/p><p><strong>Bredere godkjenning i USA: Kan teste seg til \u00e5 f\u00e5 bruke Kaftrio<\/strong><\/p><p>Noe av det mest interessante med de amerikanske godkjenningene, ogs\u00e5 denne, godkjenner bruk av Kaftrio etter positiv\u00a0<em>in vitro<\/em>-testing. In vitro-testing betyr at man tar cellemateriell fra enkeltpersoner med CF og dyrker frem celleklumper (organoider) fra enkeltpersoner med CF i en laboratoriesk\u00e5l. S\u00e5 legger man oppi den aktuelle medisinen p\u00e5 celleklumpen i laboratoriesk\u00e5len. Hvis man ser at medisinen har \u00f8nsket effekt p\u00e5 celleklumpen, kan man med stor sikkerhet anta at medisinen vil kunne fungere i kroppen til personen som har levert cellematerialet - og den aktuelle pasienten f\u00e5r lov til \u00e5 starte \u00e5 bruke medisinen selv om hen ikke har F508-del mutasjonen.<\/p><p>\u00a0<\/p><p><strong>Europa: ikke godkjent in vitro-testing<\/strong><\/p><p>Til sammenligning, er Kaftrio i Europa, og dermed Norge, kun godkjent for de som har F508del-mutasjon. Mulighet for \u00e5 kunne bruke Kaftrio p\u00e5 bakgrunn av celleklump-testing (in vitro-testing) er ikke nevnt i den europeiske godkjenningen.\u00a0<a title=\"Kaftrio p\u00e5 felleskatalogen.no\" href=\"https:\/\/www.felleskatalogen.no\/medisin\/kaftrio-vertex-pharmaceuticals-683233\" target=\"_blank\" rel=\"noopener\">Se den norske godkjenningen her<\/a>.<\/p><p>Den europeiske godkjenningen er i sin helhet basert p\u00e5 kliniske studier p\u00e5 mennesker. Slik testing kalles\u00a0<em>in vivo<\/em>-testing (hos levende-testing).<\/p><p>CF-foreningen mener at ogs\u00e5 europeiske og dermed norske myndigheter b\u00f8r kunne gi gr\u00f8nt lys for godkjenning til celleklump-testing (in vitro-testing) for Kaftrio og andre typer CFTR-modulatorer.<\/p><p>\u00a0<\/p><p><strong>Bakgrunnen for den nye indikasjonsutvidelsen<\/strong><\/p><p>Bakgrunnen for den nye indikasjonsutvidelsen for Kaftrio, er<strong>\u00a0<\/strong>en 24-ukers fase 3 \u00e5pen studie som inkluderte 75 barn i alderen 2 til 5 \u00e5r med CF for \u00e5 evaluere sikkerhet, farmakokinetikk og effekten av TRIKAFTA\u00a0\u00ae (Kaftrio). Studieopplegget\u00a0ble generelt godt tolerert, med en sikkerhetsprofil i samsvar med den som ble observert i eldre aldersgrupper, og f\u00f8rte til forbedringer i svettekloridkonsentrasjon, et m\u00e5l p\u00e5 CFTR-funksjon og lungefunksjon.\u00a0Dataene fra denne studien ble nylig publisert i\u00a0<a href=\"https:\/\/cts.businesswire.com\/ct\/CT?id=smartlink&url=https%3A%2F%2Fwww.atsjournals.org%2Fdoi%2Fabs%2F10.1164%2Frccm.202301-0084OC&esheet=53388358&newsitemid=20230426005815&lan=en-US&anchor=American+Journal+of+Respiratory+and+Critical+Care+Medicine&index=2&md5=2eb03346c610d55848b8f9f51b865f13\" rel=\"nofollow\">American Journal of Respiratory and Critical Care Medicine<\/a>, heter det i pressemeldingen.<\/p><p>Jennifer Goralski er assisterende professor i medisin og pediatri, meddirekt\u00f8r, Adult Cystic Fibrosis Center, University of North Carolina School of Medicine, og hovedansvarlig forsker for TRIKAFTA\u00a0\u00ae (Kaftrio) 2- til 5 \u00e5r gamle pivotale kliniske studie.<\/p><p>Hun understreker at \u00e5 kunne gi CFTR-modulatorbehandling til sm\u00e5 barn vil kunne p\u00e5virke barnas sykdomsutvikling.<\/p><p>I klartekst betyr det at man regner med at n\u00e5r man kan gi CFTR-modulatorbehandlign fra tidlig alder, vil man kunne hindre at de typiske CF-lungeskadene utvikler seg, og at mennesker med cystisk fibrose vil kunne ha langt mer normale liv med mindre sykdom og forh\u00e5pentlig ogs\u00e5 mindre behandlingsregime.<\/p><p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","_et_gb_content_width":"","footnotes":""},"categories":[39],"tags":[],"class_list":["post-2919","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nyheter"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.2 - 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