Tacksam f\u00f6r mycket - 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\/tacksam-for-mycket\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Tacksam f\u00f6r mycket - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Bland annat Alvas enorma envishet och positiva syn p\u00e5 livet. Att vi bor i Uppsala, Sverige, enorm kompetens hos l\u00e4kare och forskare. Att ha f\u00e5tt \u00e4ran att l\u00e4ra k\u00e4nna Anders, som l\u00e4rde oss s\u00e5 mycket, om inte bara sjukdomen, utan livet. MEN, lika mycket finns att vara kritisk mot, f\u00f6rs\u00f6ka bek\u00e4mpa. 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Bland annat Alvas enorma envishet och positiva syn p\u00e5 livet.<\/p>\n

Att vi bor i Uppsala, Sverige, enorm kompetens hos l\u00e4kare och forskare.<\/p>\n

Att ha f\u00e5tt \u00e4ran att l\u00e4ra k\u00e4nna Anders, som l\u00e4rde oss s\u00e5 mycket, om inte bara sjukdomen, utan livet.<\/p>\n

MEN, <\/strong>lika mycket finns att vara kritisk mot, f\u00f6rs\u00f6ka bek\u00e4mpa.<\/p>\n

Att f\u00e5 ut kunskap om SLE, n\u00e4r okunskapen \u00e4r s\u00e5 stor hos v\u00e4nner, v\u00e5rdgivare, ja \u00e4ven hos de som sj\u00e4lva har sjukdomen. Alla \u00e4r olika, drabbas olika, tolererar mediciner olika, tacklar problem olika.<\/p>\n

Barn som f\u00e5r SLE kan f\u00f6rlora det mesta som kallas normalt, t ex pubertet, v\u00e4nner, skolg\u00e5ng. Eller, s\u00e5 var det f\u00f6r Alva. Detta trots <\/strong>ett positivt sinne, den perfekta l\u00e5tsasfriska. <\/em>Alltid, alltid.<\/p>\n

Man ska vara j\u00e4kligt f\u00f6rsiktig med att skuldbel\u00e4gga, f\u00f6r SLE\/lupus g\u00e5r inte att bota med tro, alternativmedicin, diet, motion eller ett positivt sinne, gissa vem som skulle vara frisk d\u00e5? Det beh\u00f6vs mer pengar till forskare.<\/p>\n

Sociala medier d\u00e4r bara det positiva och perfekta visas \u00e4r f\u00f6r\u00f6dande f\u00f6r sj\u00e4lvk\u00e4nslan. F\u00f6r att inte tala om all fake news och hat. Jag f\u00f6rs\u00f6ker verkligen minska sk\u00e4rmtiden sen ett tag, av ren sj\u00e4lvbevarelsedrift. Prioritera s\u00f6mn, riktiga samtal.<\/p>\n

Det \u00e4r inte alltid av ondo att vara \u00e4rlig om hur man m\u00e5r, i l\u00e4ngden tror jag psyket m\u00e5r b\u00e4ttre av det. Det \u00e4r l\u00e5ng tid med SLE, n\u00e4stan 12 \u00e5r. Men det l\u00e4r inte forskas fram skonsammare mediciner f\u00f6r att jag skriver om det. TYV\u00c4RR.<\/p>\n

H\u00e5ller tummen f\u00f6r Alvis idag\u2764\ufe0fKram?barn och ungdomar med SLE?Ni \u00e4r f\u00e5, men ni finns???<\/p>\n

Det \u00e4r f\u00f6r mig, er och era familjer jag skriver?<\/p>\n","protected":false},"excerpt":{"rendered":"

Bland annat Alvas enorma envishet och positiva syn p\u00e5 livet. Att vi bor i Uppsala, Sverige, enorm kompetens hos l\u00e4kare och forskare. Att ha f\u00e5tt \u00e4ran att l\u00e4ra k\u00e4nna Anders, som l\u00e4rde oss s\u00e5 mycket, om inte bara sjukdomen, utan livet. MEN, lika mycket finns att vara kritisk mot, f\u00f6rs\u00f6ka bek\u00e4mpa. Att f\u00e5 ut kunskap […]<\/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":[835,28,6,10,811,32,33,15,21,25,26],"tags":[876,877],"jetpack_publicize_connections":[],"yoast_head":"\nTacksam f\u00f6r mycket - 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\/tacksam-for-mycket\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Tacksam f\u00f6r mycket - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Bland annat Alvas enorma envishet och positiva syn p\u00e5 livet. 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