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{"id":7278,"date":"2022-05-10T05:58:10","date_gmt":"2022-05-10T03:58:10","guid":{"rendered":"https:\/\/lupusmamman.se\/?p=7278"},"modified":"2022-05-10T10:07:56","modified_gmt":"2022-05-10T08:07:56","slug":"world-lupus-day-may-10-2022","status":"publish","type":"post","link":"https:\/\/lupusmamman.se\/blogg\/world-lupus-day-may-10-2022\/","title":{"rendered":"World Lupus Day, May 10"},"content":{"rendered":"\n<p>Eller <strong>internationella SLE-dagen<\/strong>, som vi s\u00e4ger i Sverige, infaller den 10 maj. F\u00f6rra \u00e5ret l\u00e5g jag neds\u00f6vd, men i \u00e5r \u00e4r jag n\u00e5gorlunda vaken. Jag kan inte fatta att vi levt snart 15 \u00e5r med denna diagnos\u2026<\/p>\n\n\n\n<figure class=\"wp-block-image size-thumbnail\"><img loading=\"lazy\" width=\"150\" height=\"150\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/tenor-150x150.gif\" alt=\"\" class=\"wp-image-7290\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/tenor-150x150.gif 150w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/tenor-300x300.gif 300w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/tenor-370x370.gif 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/tenor-75x75.gif 75w\" sizes=\"(max-width: 150px) 100vw, 150px\" \/><figcaption><mark style=\"background-color: rgba(0,0,0,0); color: #9b51e0\" class=\"has-inline-color has-vivid-purple-color\">#pediatriclupus  #kidsgetlupus  #SLE UPPM\u00c4RKSAMMA LUPUS<\/mark><\/figcaption><\/figure>\n\n\n\n<p><strong>Fakta om SLE fr\u00e5n Reumatikerf\u00f6rbundet: <\/strong><\/p>\n\n\n\n<p><a rel=\"noreferrer noopener\" href=\"https:\/\/reumatiker.se\/diagnos\/systemisk-lupus-erythematosus-sle\/\" target=\"_blank\">https:\/\/reumatiker.se\/diagnos\/systemisk-lupus-erythematosus-sle\/<\/a>. \u00c5terst\u00e5r mycket att \u00f6nska.<\/p>\n\n\n\n<figure class=\"wp-block-image size-medium\"><img loading=\"lazy\" width=\"300\" height=\"300\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-300x300.jpg\" alt=\"\" class=\"wp-image-7309\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-300x300.jpg 300w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-1024x1024.jpg 1024w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-150x150.jpg 150w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-768x768.jpg 768w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-1536x1536.jpg 1536w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386.jpg 2048w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-676x676.jpg 676w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-370x370.jpg 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-75x75.jpg 75w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3386-770x770.jpg 770w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><figcaption><a rel=\"noreferrer noopener\" href=\"https:\/\/kaleidoscopefightinglupus.org\" target=\"_blank\">Lupusfakta <\/a><\/figcaption><\/figure>\n\n\n\n<p><strong>Fakta fr\u00e5n:<\/strong> <a rel=\"noreferrer noopener\" href=\"https:\/\/www.printo.it\/pediatric-rheumatology\/SE\/info\/3\/Systemisk-Lupus-Erythematosus-(SLE)\" target=\"_blank\">https:\/\/www.printo.it\/pediatric-rheumatology\/SE\/info\/3\/Systemisk-Lupus-Erythematosus-(SLE)<\/a> Informativ sida om barnreumatologiska sjukdomar p\u00e5 svenska.<\/p>\n\n\n\n<p><strong>Fakta fr\u00e5n 1177: <\/strong><\/p>\n\n\n\n<p><a rel=\"noreferrer noopener\" href=\"https:\/\/www.1177.se\/sjukdomar--besvar\/skelett-leder-och-muskler\/leder\/sle\/\" target=\"_blank\">1177 v\u00e5rdguiden  SLE<\/a>.  \u00d6versiktlig fakta.<\/p>\n\n\n\n<p><strong>pSLE: <\/strong><a rel=\"noreferrer noopener\" href=\"http:\/\/neo.barnlakarforeningen.se\/wp-content\/uploads\/sites\/11\/2019\/04\/SLE-190405.pdf\" target=\"_blank\">Pediatrisk systemisk lupus erytematosus <\/a>V\u00e5rdprogram p\u00e5 svenska.<\/p>\n\n\n\n<p><mark style=\"background-color: rgba(0,0,0,0); color: #cf2e2e\" class=\"has-inline-color has-vivid-red-color\"><strong>HSCT &#8211; blodstamcellstransplantation <\/strong><\/mark>vid sv\u00e5r SLE som inte svarar p\u00e5 medicinsk behandling. Skulle vilja veta mer om.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-rich is-provider-soundcloud wp-block-embed-soundcloud\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Challenging but achievable: reaching Low Lupus Disease Activity State (LLDAS) in childhood-onset SLE by BMJ talk medicine\" width=\"676\" height=\"400\" scrolling=\"no\" frameborder=\"no\" src=\"https:\/\/w.soundcloud.com\/player\/?visual=true&#038;url=https%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F1245129286&#038;show_artwork=true&#038;maxheight=1000&#038;maxwidth=676\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>&#8221;Barn med lupus \u00e4r inte sm\u00e5 vuxna&#8221; En pod fr\u00e5n Lupus Science &amp; Medicin, om vikten av att n\u00e5 LLDAS, l\u00e5g lupusaktivitet-skala, studie av bl a professor Ronald van Vollenhoven, Nederl\u00e4nderna.<\/p>\n\n\n\n<pre id=\"tw-target-text\" class=\"wp-block-preformatted\">\u201dDet finns s\u00e5 mycket att g\u00f6ra\u201d: en kvalitativ studie f\u00f6r att belysa forskningsprioriteringar vid systemisk lupus erythematosus som debuterar i barndomen. <a rel=\"noreferrer noopener\" href=\"https:\/\/lupus.bmj.com\/content\/9\/1\/e000659?fbclid=IwAR3IQkON5F84zmrIwiUVk8Cd2NSbyhjoCnRmMS2yKJOEaD9D8W8c6wRAxEE\" target=\"_blank\">Childhood lupus<\/a><\/pre>\n\n\n\n<figure class=\"wp-block-image size-medium\"><img loading=\"lazy\" width=\"243\" height=\"300\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-243x300.jpg\" alt=\"\" class=\"wp-image-7301\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-243x300.jpg 243w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-829x1024.jpg 829w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-768x949.jpg 768w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-676x835.jpg 676w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-770x951.jpg 770w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331-370x457.jpg 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3331.jpg 1242w\" sizes=\"(max-width: 243px) 100vw, 243px\" \/><figcaption>V\u00e4rldens b\u00e4sta \u2665\ufe0f<\/figcaption><\/figure>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" width=\"800\" height=\"800\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361.jpg\" alt=\"\" class=\"wp-image-7305\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361.jpg 800w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-300x300.jpg 300w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-150x150.jpg 150w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-768x768.jpg 768w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-676x676.jpg 676w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-370x370.jpg 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-75x75.jpg 75w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/04\/img_3361-770x770.jpg 770w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><figcaption>Skedteorin \u00e4r en metafor som anv\u00e4nds f\u00f6r att beskriva m\u00e4ngden mental eller fysisk energi en person har tillg\u00e4nglig f\u00f6r dagliga aktiviteter och uppgifter. Teorin utvecklades 2003 av Christine Miserandino som ett s\u00e4tt att uttrycka hur det k\u00e4ndes att ha lupus. <\/figcaption><\/figure>\n\n\n\n<figure class=\"wp-block-image size-thumbnail\"><img loading=\"lazy\" width=\"150\" height=\"150\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3827-150x150.jpg\" alt=\"\" class=\"wp-image-7336\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3827-150x150.jpg 150w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3827-370x370.jpg 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3827-75x75.jpg 75w\" sizes=\"(max-width: 150px) 100vw, 150px\" \/><figcaption>Kommer aldrig mer ta n\u00e5got f\u00f6r givet <\/figcaption><\/figure>\n\n\n\n<figure class=\"wp-block-image size-medium\"><img loading=\"lazy\" width=\"225\" height=\"300\" src=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-225x300.jpg\" alt=\"\" class=\"wp-image-7337\" srcset=\"https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-225x300.jpg 225w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-768x1024.jpg 768w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-1152x1536.jpg 1152w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-1536x2048.jpg 1536w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-676x901.jpg 676w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-370x493.jpg 370w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678-770x1027.jpg 770w, https:\/\/lupusmamman.se\/wp-content\/uploads\/2022\/05\/img_3678.jpg 1650w\" sizes=\"(max-width: 225px) 100vw, 225px\" \/><figcaption>\u00c4r det inte ovanligt mycket vitsippor i \u00e5r? \ud83e\udd0d<\/figcaption><\/figure>\n\n\n\n<p>Alvas Sendoxan har inte givit n\u00e5gon effekt, vad hon k\u00e4nner. Fick kallelser till samma dag \u00e5 tid idag, till reumatologen och till neuropsykiatriker f\u00f6r utv\u00e4rdering 14 juni. Hoppas de kan hj\u00e4lpa henne. <\/p>\n\n\n\n<p class=\"has-vivid-red-color has-text-color\"><strong>Fick definitivt mer hopp efter denna artikel fr\u00e5n dr Lars R\u00f6nnblom! L\u00e4s:<\/strong> <a rel=\"noreferrer noopener\" href=\"https:\/\/via.tt.se\/pressmeddelande\/ny-antikroppsbehandling-ger-hopp-for-sle-patienter?publisherId=3235843&#038;releaseId=3320645&#038;fbclid=IwAR3QjB7xZAjZ7ycFJUM0gKID8-79b6YZjs5l1RpvWfvlWITwsdh0vCWWvRQ\" target=\"_blank\">SAPHNELO<\/a><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Eller internationella SLE-dagen, som vi s\u00e4ger i Sverige, infaller den 10 maj. F\u00f6rra \u00e5ret l\u00e5g jag neds\u00f6vd, men i \u00e5r \u00e4r jag n\u00e5gorlunda vaken. Jag kan inte fatta att vi levt snart 15 \u00e5r med denna diagnos\u2026 Fakta om SLE fr\u00e5n Reumatikerf\u00f6rbundet: https:\/\/reumatiker.se\/diagnos\/systemisk-lupus-erythematosus-sle\/. \u00c5terst\u00e5r mycket att \u00f6nska. Fakta fr\u00e5n: https:\/\/www.printo.it\/pediatric-rheumatology\/SE\/info\/3\/Systemisk-Lupus-Erythematosus-(SLE) Informativ sida om barnreumatologiska sjukdomar [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":7301,"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":[1041,835,28,7,1012,32,33,852,1011,21],"tags":[118,1043,856,895,1023,242,882,455,456,1044,863,1089,722,808],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v19.10 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>World Lupus Day, May 10 - 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\/world-lupus-day-may-10-2022\/\" \/>\n<meta property=\"og:locale\" content=\"sv_SE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"World Lupus Day, May 10 - Vad \u00e4r SLE sjukdom? - Lupusmammans SLE blogg\" \/>\n<meta property=\"og:description\" content=\"Eller internationella SLE-dagen, som vi s\u00e4ger i Sverige, infaller den 10 maj. F\u00f6rra \u00e5ret l\u00e5g jag neds\u00f6vd, men i \u00e5r \u00e4r jag n\u00e5gorlunda vaken. Jag kan inte fatta att vi levt snart 15 \u00e5r med denna diagnos\u2026 Fakta om SLE fr\u00e5n Reumatikerf\u00f6rbundet: https:\/\/reumatiker.se\/diagnos\/systemisk-lupus-erythematosus-sle\/. \u00c5terst\u00e5r mycket att \u00f6nska. 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