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Vad \u00e4r SLE?<\/a><\/strong><\/p>\n\n\n\n

29 oktober 2007. Kommer spontant ih\u00e5g att hon den dagen, eller m\u00f6jligen dagarna d\u00e4rp\u00e5 sa, att hon skulle bli den f\u00f6rsta dom botade. Jag hoppas hon f\u00e5r r\u00e4tt fortfarande, \u00e4ven om det g\u00e5r sakta. Egentligen delar jag upp tiden i barn och efter 19 (n\u00e4r hon b\u00f6rjade tillh\u00f6ra vuxenreumatologen), d\u00e4r efter 19 inneburit ett uppvaknande av icke angen\u00e4mt slag. Att hon pl\u00f6tsligt \u00e4r anonym, trots sin \u00e5lder och ovanliga diagnos, att jag f\u00f6rst m\u00e5ste f\u00f6rklara\/n\u00e4stan urs\u00e4kta varf\u00f6r jag ringer, att inte f\u00e5 h\u00e4lsa p\u00e5 vid inl\u00e4ggningar, att hon liksom \u00e4r ensam med allt. <\/p>\n\n\n\n

Teamet med l\u00e4kare, sjuksk\u00f6terska, psykolog, kurator, fysio- och arbetsterapeut p\u00e5 Barnsjukhuset var fantastiskt. Vi kunde inte blivit b\u00e4ttre ”fostrade”. Men det \u00e4r fortfarande, som sagt, ett trist l\u00e4ge nu. Det \u00e4r inte s\u00e5 att symptomen blivit f\u00e4rre med \u00e5ren, precis tv\u00e4rtom, fler uppkommer. <\/p>\n\n\n\n

H\u00e4romdagen var hon hos neuropsykolog inf\u00f6r behandlingen, hon kom hem helt f\u00e4rdig och arg f\u00f6r parkeringen kostade n\u00e4stan 200 kr. Det tog 3 timmar (!) och \u00e4nd\u00e5 ska hon tillbaka om n\u00e5gra dagar. Tror det kommer g\u00e5 r\u00e4tt fort efter det, att komma ig\u00e5ng med cellgiftsbehandlingen. Jag \u00e4r nerv\u00f6s inf\u00f6r den, den m\u00f6rka \u00e5rstiden med mest inomhus-umg\u00e4nge, vilket s\u00e5klart \u00f6kar risken f\u00f6r att bli smittad. <\/p>\n\n\n\n

Jag k\u00e4nner mig v\u00e4l r\u00e4tt icke-inkluderad som n\u00e4rmast anh\u00f6rig mamma, men Alva har f\u00f6rhoppningsvis l\u00e4rt sig en del av mig och har sj\u00e4lv ett j\u00e4klar anamma i sig. Men inte j\u00e4mt s\u00e5klart.<\/p>\n\n\n\n

H\u00e4r \u00e4r st\u00e4llen man kan sk\u00e4nka pengar till forskning. Jag blir glad om n\u00e5gon s\u00e4ger till om det finns n\u00e5gon mer specifik forskning i Sverige man kan ge till;<\/p>\n\n\n\n

Lupus research<\/a> <\/strong><\/p>\n\n\n\n

M\u00e4rk SLE forskning<\/a> <\/strong> <\/p>\n\n\n\n

Min stora dag<\/a> (f\u00f6r barn upp till 18) <\/strong><\/p>\n\n\n\n

\"Mr<\/a><\/figure>\n\n\n\n
\"Kila<\/a><\/figure><\/div>\n\n\n\n
\"\"<\/a><\/figure>\n\n\n\n
\"\"<\/a><\/figure><\/div>\n\n\n\n
\"\"<\/a><\/figure>\n\n\n\n
\"Missen\"<\/figure><\/div>\n\n\n\n
\"\"<\/figure>\n\n\n\n
\"Love<\/figure><\/div>\n\n\n\n
\"\"<\/figure>\n\n\n\n
\"\"<\/figure><\/div>\n\n\n\n
\"\"<\/figure>\n","protected":false},"excerpt":{"rendered":"

Vad \u00e4r SLE? 29 oktober 2007. Kommer spontant ih\u00e5g att hon den dagen, eller m\u00f6jligen dagarna d\u00e4rp\u00e5 sa, att hon skulle bli den f\u00f6rsta dom botade. Jag hoppas hon f\u00e5r r\u00e4tt fortfarande, \u00e4ven om det g\u00e5r sakta. Egentligen delar jag upp tiden i barn och efter 19 (n\u00e4r hon b\u00f6rjade tillh\u00f6ra vuxenreumatologen), d\u00e4r efter 19 […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"jetpack_publicize_message":"","jetpack_is_tweetstorm":false,"jetpack_publicize_feature_enabled":true},"categories":[835,28,1012,31,811,32,33,1011,15,20,21,24,25],"tags":[52,1051],"jetpack_publicize_connections":[],"yoast_head":"\n14 \u00e5r med SLE-diagnos - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lupusmamman.se\/blogg\/14-ar-med-sle-diagnos\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"14 \u00e5r med SLE-diagnos - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Vad \u00e4r SLE? 29 oktober 2007. Kommer spontant ih\u00e5g att hon den dagen, eller m\u00f6jligen dagarna d\u00e4rp\u00e5 sa, att hon skulle bli den f\u00f6rsta dom botade. Jag hoppas hon f\u00e5r r\u00e4tt fortfarande, \u00e4ven om det g\u00e5r sakta. 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