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Livet f\u00f6r\u00e4ndrades kapitalt n\u00e4r min dotter fick den ovanliga diagnosen SLE i oktober 2007. Det var en s\u00e5n chock, som s\u00e5klart utl\u00f6ste en krisreaktion, vilken fortg\u00e5r i varierad intensitet, inte minst p\u00e5 grund av det som h\u00e4nde med omgivningen; v\u00e4nner som slutade h\u00f6ra av sig, den efterf\u00f6ljande ensamheten. Ovanp\u00e5 tuffa behandlingar och provtagningar s\u00e5 ofta att det knappt gick att sticka, biverkningar av de starka medicinerna och sjukdomen i sig. Hon var bara 10 \u00e5r. Efter 19 \u00e5rs \u00e5lder fick hon sluta g\u00e5 p\u00e5 barnreuma med hela teamet (sjuksk\u00f6terska, l\u00e4kare, kurator, fysioterapeut, arbetsterapeut och psykolog). Sedan dess \u00e4r det en kamp f\u00f6r att f\u00e5 den v\u00e5rd hon beh\u00f6ver.<\/p>\n

Varf\u00f6r blogga om el\u00e4ndet?<\/strong><\/p>\n

Fr\u00e4mst f\u00f6r att lindra den psykiska b\u00f6rdan f\u00f6r egen del genom att skriva av mig, informera de n\u00e4rmaste p\u00e5 ett st\u00e4lle, men ocks\u00e5 f\u00f6r att m\u00f6jligen peppa och informera de i liknande situation. Det finns ingen som talar f\u00f6r barn och ungdomar med SLE, utan de grupper som finns och den n\u00e4st intill obefintliga fakta som finns skriven i Sverige, talar om och till de med lindrig SLE och de som f\u00e5tt sjukdomen efter puberteten, de som redan f\u00e5tt barn. Det \u00e4r ett stort gap, brist p\u00e5 kunskap och faktabrist om hur det \u00e4r f\u00f6r barn och ungdomar (och inte minst deras f\u00f6r\u00e4ldrar) att leva med SLE. Jag k\u00e4nner att jag beh\u00f6vs! Jag skriver om Alvas SLE-erfarenheter och f\u00f6respr\u00e5kar alltid<\/strong> l\u00e4karvetenskap. Alla med SLE \u00e4r unika och olika, d\u00e4rf\u00f6r \u00e4r det viktigt f\u00f6r mig. Det f\u00f6rekommer \u00e4n att unga m\u00e4nniskor d\u00f6r pga att de slutar med medicinerna och f\u00f6rlitar sig p\u00e5 pseudovetenskapen, vilket \u00e4r oerh\u00f6rt tragiskt. Fr\u00e5ga alltid din l\u00e4kare \u00e4r mitt b\u00e4sta r\u00e5d.<\/p>\n

– Jag \u00e4r inte sjukdomen, s\u00e4ger Alva. Det \u00e4r v\u00e5r r\u00e4ddning, liksom djur och natur.<\/p>\n

Administrerar en st\u00f6dgrupp p\u00e5 Facebook f\u00f6r anh\u00f6riga, sluten grupp: F\u00f6r\u00e4ldrar till unga med SLE<\/strong><\/p>\n

St\u00f6dgrupp p\u00e5 Facebook f\u00f6r unga med SLE d\u00e4r Alva \u00e4r admin, ocks\u00e5 sluten grupp: Ung Med SLE<\/strong><\/p>\n

Denna bok \u00e4r det n\u00e4rmaste jag l\u00e4st hittills om att leva med ett kroniskt sjukt barn. \"\"<\/a>\"\"<\/a>V\u00e4lkommen<\/strong> och tveka inte att maila (soderlund.68@hotmail.com) eller kommentera vid fr\u00e5gor, tips, kontakt!<\/p>\n

\/Charlotte<\/em><\/p>\n

<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Livet f\u00f6r\u00e4ndrades kapitalt n\u00e4r min dotter fick den ovanliga diagnosen SLE i oktober 2007. Det var en s\u00e5n chock, som s\u00e5klart utl\u00f6ste en krisreaktion, vilken fortg\u00e5r i varierad intensitet, inte minst p\u00e5 grund av det som h\u00e4nde med omgivningen; v\u00e4nner som slutade h\u00f6ra av sig, den efterf\u00f6ljande ensamheten. Ovanp\u00e5 tuffa behandlingar och provtagningar s\u00e5 ofta […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","meta":{"jetpack_post_was_ever_published":false},"yoast_head":"\nOm mig, "lupusmamman" - 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\/om-lupusmamman\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Om mig, "lupusmamman" - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Livet f\u00f6r\u00e4ndrades kapitalt n\u00e4r min dotter fick den ovanliga diagnosen SLE i oktober 2007. 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