💊 Adherence works best when patients & healthcare professionals work as a team.
Patients need a safe space to explain what makes it difficult. HCP need to ask the right questions.
Prof Nathalie Costedoat-Chalumeau explains why this conversation matters
https://youtu.be/hNlDFIGck7E
🚨 These days the sun 🌞 is shining 💥 Let's keep in mind the importance of #photoprotection 😎 if you have #Lupus. Ultraviolet (UV) radiations can be very damaging for Lupus skin 🔥 with apoptosis of keratinocytes and interferon release ⚡
Check4more: https://doi.org/10.1093/rheumatology/kead548
✅ With #CORRELATE, we deploy a full research program for #cognition in #lupus and other #autoimmune diseases
-Step 1: assess cognitive (subjective) SYMPTOMS - milestone accomplished with the #LBFSS (https://doi.org/10.1136/lupus-2026-002148)
-Step 2: assess cognitive FUNCTION with #COGNILUP
✅ Check our latest publication in @NatRevNeph about Disease modification in #lupus #nephritis: towards a pathophysiology-based treatment paradigm 🎯
👀 Read-only link: https://rdcu.be/fvpst
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the FREQUENCY, INTENSITY & DURATION of brainfog 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
🧠 “Your experience of brain fog is real. It is common. It deserves attention.”
Prof @lupusreference & our Chair, @Jeanette_Lupus, explain how people living with #lupus helped shape the #LBFSS from the very beginning.
📖 Read the study: https://lupus.bmj.com/content/13/2/e002148
✅ If you have #lupus, PLEASE HELP US with the #CORRELATE study 👀🙏🔁 it will take just 5 minutes of your time and help us understand #brainfog
Take the study: https://lupusresearch.limequery.org/485358?lang=en
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the IMPACT on LIFE, RELATIONSHIPS & WORK 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
💊 Are you finding it difficult to follow your treatment?
💜 You're not alone.
Sometimes the problem isn't forgetting.
It might be that:
• the tablets are too large to swallow
• dry mouth makes them uncomfortable
• painful hands make blister packs difficult to open
• you're worried about possible side effects
• you're afraid of injections.
☀️ Or something else entirely. Perhaps you've been advised to avoid sun exposure, but your work requires you to spend long hours outdoors, making it difficult to follow that recommendation.
💊 Maybe getting your medication is not always easy because of distance, access, travel, daily routines or other practical reasons.
💫 Whatever the reason, your medical team can only help if they know about it.
💬 Remember that your health comes first. Tell your healthcare team about anything that makes your treatment difficult. They may be able to help you find a solution that works better for you.
In this interview recorded during #ELM2026, Prof. Nathalie Costedoat-Chalumeau explains why these conversations are so important.
🎥 Watch the video:
youtu.be/hNlDFIGck7E
▶️ Don't miss out and visit the Videos on demand section on our website for the full #ELM2026 series:
www.lupus-europe.org/videos-on-demand/
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🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”
That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.
Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.
🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.
🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.
📖 Read the study:
lupus.bmj.com/content/13/2/e002148
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‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.
💁♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.
➡️ Follow Sjögren Europe to know more.
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🧠 Brain fog is real.
For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.
✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.
🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.
🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.
lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
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