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Och inte minst f\u00f6r\u00e4ldrar… Jag trodde aldrig att det inte <\/strong>skulle funka, jag var s\u00e5 naiv. Ett barn (Alva) p\u00e5 10 \u00e5r vill sm\u00e4lta in, inte sticka ut, utan vara som alla andra. N\u00e4r sjukdomen inte syns \u00e4r det om\u00f6jligt att f\u00f6rst\u00e5 f\u00f6r omgivningen. OCH tyv\u00e4rr \u00e4ven n\u00e4r h\u00f6ga doser cortison gjorde den synlig.<\/p>\n

L\u00c4S????? https:\/\/www.lupus.org\/resources\/what-teachers-should-know-about-lupus<\/a><\/p>\n

L\u00e4s g\u00e4rna de 15 punkterna<\/em><\/strong>?<\/p>\n

Bland annat;<\/p>\n

– Lupus\/SLE \u00e4r inte smittsamt.<\/p>\n

– Det \u00e4r en kronisk sjukdom som kan drabba alla organ<\/em> i kroppen (fr\u00e5n hud till njurar t ex).<\/p>\n

– Symptom kan komma pl\u00f6tsligt och i m\u00e5nga olika skepnader.<\/p>\n

– Lupus \u00e4r olika f\u00f6r varje person (men generellt sv\u00e5rare hos barn).<\/p>\n

– B\u00e5de sjukdomen och medicinerna g\u00f6r barnet mer infektionsk\u00e4nsligt, b\u00f6r inte s\u00e4tta sig bredvid en klasskamrat som \u00e4r sjuk och t ex hostar. (Inte l\u00e4tt som 10-\u00e5ring, h\u00e4r betyder l\u00e4raren mycket).<\/p>\n

– Barn med lupus vill bli behandlade som alla andra. <\/strong><\/p>\n

https:\/\/friends.se\/stod-oss\/ge-en-gava\/<\/figcaption><\/figure>\n

Hoppas ni l\u00e4ser. Hade det funkat d\u00e4r i b\u00f6rjan p\u00e5 alla punkter hade mycket lidande kunnat undvikas, som p\u00e5verkar \u00e4n idag. Hos b\u00e5de Alva och mig.<\/p>\n

Jag hade mer \u00e4n fullt upp med chocken, all samordning, l\u00e4ra mig om sjukdomen och alla symptom (det kom nya i princip varje vecka f\u00f6rsta 3 \u00e5ren), ta tempen, informera, g\u00f6ra dosetter, peppa. Hade inte kunskapen eller tiden att g\u00f6ra mer ang\u00e5ende skolsituationen, vilket jag lever med och m\u00e5ste acceptera idag. Jag t\u00e4nkte p\u00e5 hur jag<\/em> skulle reagera och prata med Oskar \u00e5 Alva om de<\/em> skulle ha en klasskompis som fick en sv\u00e5r sjukdom. Sunt f\u00f6rnuft kommer man l\u00e5ngt med, men det \u00e4r l\u00e5ngt ifr\u00e5n alla som har f\u00f6rm\u00e5gan till empati, mer \u00e4n f\u00f6r de egna.<\/p>\n

Men det \u00e4r ju bra f\u00f6r kommande barn med SLE om det kan funka b\u00e4ttre! Mycket \u00e4r exakt lika som hos barn med cancer, som t ex utseende, bortavaro och mediciner, s\u00e5 f\u00f6rhoppningen \u00e4r ju att barn med SLE \u00e5tminstone kan behandlas lika, t ex att l\u00e4raren ibland pratar om den som inte kan g\u00e5 i skolan, kanske skickar en h\u00e4lsning, s\u00e5 de inte gl\u00f6ms bort. Det spelar liksom ingen roll f\u00f6r ett barn vad diagnosen heter, det \u00e4r just att hantera den och l\u00e4ra sig leva med. Barnet \u00e4r exakt samma person inombords<\/em>, \u00e4ven efter diagnos!<\/p>\n

En ung m\u00e4nniskas guide, fr\u00e5n Lupus UK: https:\/\/www.lupusuk.org.uk\/wp-content\/uploads\/2018\/08\/My-Lupus-What-I-Need-to-Know-V1.pdf<\/a><\/p>\n

? #pediatriclupusawareness #fucklupus<\/p>\n

Tack & lov f\u00f6r djuren???\u2665\ufe0f<\/p>\n","protected":false},"excerpt":{"rendered":"

Och inte minst f\u00f6r\u00e4ldrar… Jag trodde aldrig att det inte skulle funka, jag var s\u00e5 naiv. Ett barn (Alva) p\u00e5 10 \u00e5r vill sm\u00e4lta in, inte sticka ut, utan vara som alla andra. N\u00e4r sjukdomen inte syns \u00e4r det om\u00f6jligt att f\u00f6rst\u00e5 f\u00f6r omgivningen. OCH tyv\u00e4rr \u00e4ven n\u00e4r h\u00f6ga doser cortison gjorde den synlig. L\u00c4S????? 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