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T\u00e4nk att hon levt s\u00e5 l\u00e4nge med den \u00e4nnu i Sverige i princip oomtalade diagnosen systemisk lupus erytematosus. Alla mediciner intagna morgon och kv\u00e4ll sen den dagen, 29 oktober 2007. Det \u00e4r en tuff diagnos att f\u00e5 som 10-\u00e5ring, men vi hade v\u00e4rldens b\u00e4sta team omkring oss de f\u00f6rsta 8 \u00e5ren, s\u00e5 vi k\u00e4nde \u00e4nd\u00e5 en trygghet i, att \u00e4ven om det \u00e4r en kronisk sjukdom med m\u00e5nga symptom, ibland v\u00e4ldigt akuta, att snabbt f\u00e5 hj\u00e4lp fr\u00e5n v\u00e5rden. Den tryggheten har jag saknat r\u00e4tt m\u00e5nga \u00e5r nu. \u00c4ven Alva, som oftast inte ber\u00e4ttar direkt, utan ser det mesta som \u201djaha ytterligare grej att leva med\u201d. <\/p>\n\n\n\n

Nu ifr\u00e5gas\u00e4tts patient och anh\u00f6rig vid all kontakt p\u00e5 ett helt annat s\u00e4tt, trots att snabbt omh\u00e4ndertagande kan vara skillnaden mellan liv och d\u00f6d. Tacka f..n f\u00f6r att det \u00e4r p\u00e5frestande att leva med, oron vid nya (eller gamla) symptom, att s\u00e4llan veta om man g\u00f6r r\u00e4tt som stannar hemma, f\u00f6r att slippa akuten. \u00c4ven n\u00e4r det inte \u00e4r coronapandemi! Det g\u00e4ller att ha tilltro till dig sj\u00e4lv, att du som patient och n\u00e4rmast anh\u00f6rig vet b\u00e4st, har st\u00f6rst erfarenhet, men att lita p\u00e5 magk\u00e4nslan och orka bli ifr\u00e5gasatt m\u00e5nga g\u00e5nger innan man kommer till r\u00e4tt instans (som sj\u00e4lvklart borde vara reumatologen, d\u00e4r de samordnar s\u00e5 symptom\/skov kommer till r\u00e4tt st\u00e4lle). Och d\u00e5 pratar jag bara om det fysiska. Den mentala biten som tillkommer \u00e4r gigantisk och sv\u00e5r f\u00f6r b\u00e5de patient och anh\u00f6riga, men hur och n\u00e4r det st\u00f6det eventuellt kommer… Inte \u00e4r det l\u00e4tt att k\u00e4mpa n\u00e4r man \u00e4r sjuk alla fall. <\/p>\n\n\n\n

Som jag \u00f6nskar jag kunde s\u00e4ga \u201ddet blir l\u00e4ttare f\u00f6r varje \u00e5r\u201d.<\/p>\n\n\n\n

\"\"
St\u00f6d. K\u00e4rlek. B\u00e4sta v\u00e4n<\/figcaption><\/figure>\n\n\n\n

K\u00e4nner ingen som reser sig efter motg\u00e5ngar som hon. Som alltid lever som om hon var frisk (hur dumt det \u00e4n m\u00e5 vara m\u00e5nga g\u00e5nger). Som aldrig vill vara sin sjukdom, ser acceptans som att ge upp. Som k\u00e4mpar varje dag med saker som \u00e4r sj\u00e4lvklara f\u00f6r friska. Som med egen energi (och mycket pengar) utbildat Kila till assistanshund. Det \u00e4r fantastiskt, minst sagt. Och en trygghet. Det st\u00f6d \u00e5 k\u00e4rlek Kila ger \u00e4r obeskrivligt.<\/p>\n\n\n\n

Jag blir fortfarande frustrerad \u00f6ver att s\u00e5 f\u00e5 k\u00e4nner till sjukdomen, att det inte uppm\u00e4rksammas medialt, annat \u00e4n om SLE klumpas ihop som reumatism, som ju \u00e4r 1 av ca 200 reumatiska diagnoser. Att det tar s\u00e5 l\u00e5ng tid innan forskning ger ev resultat. Att det inte finns medel att s\u00f6ka f\u00f6r t ex h\u00e5ravfall, utbildningar mm. Att hon och andra med sv\u00e5ra diagnoser m\u00e5ste v\u00e4nta m\u00e5nader p\u00e5 konsultationer som f\u00f6rr ans\u00e5gs akuta.<\/p>\n\n\n\n

Vi har gjort och g\u00f6r allt f\u00f6r att kunna ha djuren. De \u00e4r h\u00e4r och nu & \u00e4lskar en villkorsl\u00f6st. <\/p>\n\n\n\n

\"\"
\u00c4lskar dig o\u00e4ndligt Alva\u2764\ufe0f<\/figcaption><\/figure>\n\n\n\n

#lupusawareness <\/p>\n\n\n\n

#pediatriclupus <\/p>\n\n\n\n

#SLE <\/p>\n\n\n\n

#lupusresearch<\/p>\n\n\n\n

https:\/\/www.internetmedicin.se\/behandlingsoversikter\/reumatologi\/systemisk-lupus-erythematosus-sle\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

T\u00e4nk att hon levt s\u00e5 l\u00e4nge med den \u00e4nnu i Sverige i princip oomtalade diagnosen systemisk lupus erytematosus. Alla mediciner intagna morgon och kv\u00e4ll sen den dagen, 29 oktober 2007. Det \u00e4r en tuff diagnos att f\u00e5 som 10-\u00e5ring, men vi hade v\u00e4rldens b\u00e4sta team omkring oss de f\u00f6rsta 8 \u00e5ren, s\u00e5 vi k\u00e4nde \u00e4nd\u00e5 […]<\/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":[3,5,835,28,10,1012,811,32,1011,15,20,21,24],"tags":[],"jetpack_publicize_connections":[],"yoast_head":"\n13 \u00e5r sen diagnos SLE - 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\/snart-13-ar-sen-diagnos-sle\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"13 \u00e5r sen diagnos SLE - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"T\u00e4nk att hon levt s\u00e5 l\u00e4nge med den \u00e4nnu i Sverige i princip oomtalade diagnosen systemisk lupus erytematosus. 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