Until the end of the month, the British Medical Journal has a special free access area with a focus on Lupus. Please click here to view.
Alain Cornet- Posted on
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🧠 Brainfog is one of the most invisible symptoms of lupus, and it still has no official scale.
Prof. @LupusReference & LBFSS team, with the support of Lupus Europe, are changing that—and they need YOU.
📲 Fill the survey. Let’s make brainfog visible.
🔗 https://lupusresearch.limequery.org/697679?lang=en
🦋 Do you have cutaneous #lupus?
💻 In that case, you cannot miss this webinar organised by @ern_reconnet!
Register now for the 🆕@ern_reconnet #webinar “From basics to updates for cutaneous lupus erythematosus (CLE)” with Dr François Chasset moderated by Dr Maarten Limper.
🗓️May 14th - 16 CEST
✍️Register here🆓http://bit.ly/4dpRAfT
✅ Don't forget to participate to the #lupus #brainfog study ⬇️ It's simple & can help other patients a lot. We simply ask you how OFTEN and STRONGLY you have #brainfog and more importantly what are the 'FEELINGS' and 'IMPRESSIONS' you have during your brainfog episodes
❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.
However, there's something 🗝️that we also need to show.
🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life
🦋 Today on #WorldLupusDay, we shine a light on childhood-onset SLE #cSLE Early diagnosis, better treatments, and global awareness can transform young lives 🌟
🤝Let’s stand together to support children living with lupus 💜 #Lupus #LupusAwareness #PediatricRheumatology
It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's 🔝dangerous & frequent complications.
Routine checkups➕available treatments make it possible for 60–70% of patients to achieve complete or partial remission
#WorldLupusDay
#Lupus100
Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100
✨What a wonderful way to raise awareness!
Giving voice to patients is crucial to truly understand the real impact of #lupus. Empowering #PROs helps bridge the gap between clinical perspectives and lived experiences.
Proud to be part of #3TR!
#WorldLupusDay
#Lupus affects millions but is often misunderstood. On #WorldLupusDay, #3TR unites to #MakeLupusVisible.
Blanca Rubio, @LupusEurope patient representative, discusses how #PROs can transform care and improve treatment.
👉 Watch: https://3tr-imi.eu/research/patient-reported-outcomes
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🦋 #WorldLupusDay is coming to an end!
❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.
🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.
🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.
🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.
🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.
💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.
#WorldLupusDay
#Lupus100
0 CommentsComment on Facebook
🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.
Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469
And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!
lupus100.org/en/100-questions#Challenges
Need more? Check out #LupusGPT! lupusgpt.org/
#WorldLupusDay
#Lupus100
2 CommentsComment on Facebook
🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.
It affects not only patients but also their loved ones.
Do you want to know what the first symptoms of #lupus are?
Visit #Lupus100 and #lupusgpt and find out!
Getting to know the disease is key for an early diagnosis.
lupus100.org/en/questions/what-are-the-first-signs-of-lupus
lupusgpt.org/
#WorldLupusDay
#MakeLupusVisible
3 CommentsComment on Facebook
