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{"id":4748,"date":"2019-09-27T16:29:00","date_gmt":"2019-09-27T16:29:00","guid":{"rendered":"https:\/\/lupusmamman.se\/?p=4748"},"modified":"2019-09-27T20:41:23","modified_gmt":"2019-09-27T20:41:23","slug":"ur-bulletinen","status":"publish","type":"post","link":"https:\/\/lupusmamman.se\/blogg\/ur-bulletinen\/","title":{"rendered":"Hur m\u00e5nga \u00e4r vi?"},"content":{"rendered":"
Ur tidningen Bulletinen<\/p><\/div>\n
J\u00e4ttebra f\u00f6r de barn som kan bli hj\u00e4lpta av Benlysta??<\/p>\n
Benlysta har aldrig varit aktuell f\u00f6r Alva, d\u00e5 den \u00e4r b\u00e4st p\u00e5 lindrigare manifestationer av SLE. Hon har f\u00e5tt rituximab (Mabthera), som ocks\u00e5 \u00e4r ett biologiskt l\u00e4kemedel, dock opr\u00f6vat\/inte godk\u00e4nt p\u00e5 barn. Vi hade inga val \u00e4n att ta emot den, men jag var lika orolig vid varje tillf\u00e4lle under de 6-7 \u00e5ren, att det skulle bli n\u00e5n reaktion. Den \u00e4r fr\u00e4mst f\u00f6r sv\u00e5ra skov p\u00e5 inre organ, njurar i Alvas fall. Den d\u00e5 samtidigt som alla andra mediciner, inte ist\u00e4llet f\u00f6r.<\/p>\n
Undrar om det \u00e4r 200 barn som ovan i Sverige eller 100, som nedan.?OCH <\/strong>om det \u00e4r fler som f\u00e5tt Mabthera, som Alva. Hoppas Mabthera blir godk\u00e4nd s\u00e5 sm\u00e5ningom som lupus-l\u00e4kemedel, men s\u00e5klart \u00e4ven att skonsammare, mer riktade mediciner forskas fram ???<\/p>\n
Och om det \u00e4r fler som f\u00e5tt k\u00e4mpa med att puberteten inte b\u00f6rjat pga sjukdomen och medicinerna.<\/p>\n
Tveka inte att h\u00f6ra av er om ni vill, ni f\u00f6r\u00e4ldrar till de 99 till 200 (?) barnen\/ungdomarna med SLE? Man f\u00f6rst\u00e5r att det \u00e4r sv\u00e5rt att f\u00e5 ut fakta och information, f\u00e5 folk att ge pengar till forskning med mera, n\u00e4r vi \u00e4r s\u00e5 f\u00e5.<\/p>\n
S\u00e4g till om ni har ett f\u00f6rslag till gemensam insamling eller om vi kan f\u00e5 synas p\u00e5 TV eller i n\u00e5gon tidning t ex. Kan n\u00e5got som t ex ice bucket challenge i sociala medier till v\u00e4nner, v\u00e4nners v\u00e4nner ge n\u00e5got? Fundera och som sagt, tveka inte att maila i s\u00e5 fall. Vi finns<\/strong>??<\/p>\n
J\u00e4ttebra f\u00f6r de barn som kan bli hj\u00e4lpta av Benlysta?? Benlysta har aldrig varit aktuell f\u00f6r Alva, d\u00e5 den \u00e4r b\u00e4st p\u00e5 lindrigare manifestationer av SLE. Hon har f\u00e5tt rituximab (Mabthera), som ocks\u00e5 \u00e4r ett biologiskt l\u00e4kemedel, dock opr\u00f6vat\/inte godk\u00e4nt p\u00e5 barn. Vi hade inga val \u00e4n att ta emot den, men jag var lika […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","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":[835,28,811,33,21],"tags":[925,926,924],"jetpack_publicize_connections":[],"yoast_head":"\n
Hur m\u00e5nga \u00e4r vi? - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg<\/title>\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\t\n\t\n\t\n