Zoe Karakikla-MitsakouLupus Europe Youth Group Meet Up Lupus Europe is organising a Meet Up of the Lupus Europe Youth Group! This event will take place from October 20 to October 22, in Leuven (Belgium). There are a few remaining spots available for new members to join: Do you have lupus? Do you live in geographical Europe? […]
✅ Happy to report that the #ENDORSED study, defining SEVERE #Lupus has been submitted for review and hopefully publication. We have defined by consensus both "severe #SLE" but also "SLE with severe impact on life" which is soooo important in the patient perspective 👍🦋
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🔴 Healthcare professionals: Do you discuss extreme heat safety with your patients?
🦋 Patients: Has your doctor ever explained how to protect yourself during a #heatwave?
Extreme heat can affect health, especially in people with #lupus. Reliable information matters.
🎥 Our #EULAR2026 recap webinar is now on YouTube!
Lupus Europe volunteers bring back some key learnings: fatigue, pain & lived experience, #LupusGPT, access, youth co-creation & new research directions.
Thank you to those who helped make this possible
https://f.mtr.cool/ryytqqlxop
🙏 Thank you @LupusEurope and thank you as well to all those living with #lupus who have participated from the first step of #Brainfog qualitative assessment to the final validation of the #LBFSS - This new #PRO was made WITH you and FOR YOU 🦋
‼️ Although not everyone is photosensitive, UV exposure could trigger flares in some people with #lupus.
☀️ UV rays are present year-round! Always protect your skin. Especially this Summer!
🤔 Questions? Explore reliable resources like #Lupus100 or ask #LupusGPT or #EasyLupus!
Huge congratulations, Professor @Lupusreference! 💜
🥰 Lupus Europe is proud to have been part of this project from the very beginning.
🧠 Brain fog is one of the symptoms that many people with lupus struggle to explain and have recognised.
🙌🏻 This instrument is a very
✅ Dear #lupus patients, I am very happy to report that the LBFSS manuscript (Lupus #Brainfog Severity Scale) just got accepted for publication @Lupus_SM 🦋 I am very happy as this is the first SLE-specific #cognition symptom score in SLE and will help so many people 🙏
✅ Dear #lupus patients, I am very happy to report that the LBFSS manuscript (Lupus #Brainfog Severity Scale) just got accepted for publication @Lupus_SM 🦋 I am very happy as this is the first SLE-specific #cognition symptom score in SLE and will help so many people 🙏
🦋 Our final #EULAR2026 recap is here!
From @Jeanette_Lupus packed Meet the Expert Session on #LupusGPT & #EasyLupus to seeing Lupus Europe’s work recognised in the @eular_org highlights, the last day brought real visibility to work on trusted lupus information, communication, &
☀️ 𝗨𝗩 𝗹𝗶𝗴𝗵𝘁 𝗮𝗻𝗱 𝗹𝘂𝗽𝘂𝘀: 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗨𝗩𝗔 𝗮𝗻𝗱 𝗨𝗩𝗕 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.
Ultraviolet light is one of the components of solar radiation. In lupus, UV exposure can contribute to 𝘄𝗼𝗿𝘀𝗲𝗻𝗶𝗻𝗴 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗼𝗿 𝘁𝗿𝗶𝗴𝗴𝗲𝗿𝗶𝗻𝗴 𝗳𝗹𝗮𝗿𝗲𝘀 in some people.
💁♀️ That is why we are launching our #lupusuvprotection campaign: to raise awareness of the impact UV light can have on people living with lupus, especially during summer.
🦋 Photosensitivity is one of the most common manifestations of systemic lupus erythematosus. In the Lupus Europe Living with SLE in 2020 survey, 𝗽𝗵𝗼𝘁𝗼𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝘄𝗮𝘀 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.
But UV-related lupus symptoms do not always affect only the skin. UV exposure has also been associated with systemic symptoms such as 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗮𝗻𝗱 𝗷𝗼𝗶𝗻𝘁 𝗽𝗮𝗶𝗻, and may contribute to 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 in some people.
So what is the difference?
🔴 𝗨𝗩𝗕 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is mainly associated with sunburn.
🔸 Its intensity fluctuates during the day.
🔸 It is usually strongest around the middle of the day.
🔸 It mainly affects the outer layers of the skin.
🔴 𝗨𝗩𝗔 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Penetrates deeper into the skin.
🔸 Is associated with skin ageing.
🔸 Its intensity is more constant during the day.
🔸 It can penetrate clouds and windows.
🌡️ 𝗜𝗻𝗳𝗿𝗮𝗿𝗲𝗱 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is perceived as heat.
🔸 Feeling less heat does not necessarily mean there is no UV exposure.
‼️ This is important because UV exposure can still happen even when the sun does not feel strong. UVA rays can pass through clouds and some types of glass, which means UV protection may still be relevant on cloudy days, near windows, while travelling by car or during everyday activities.
Although not everyone with lupus is photosensitive, people living with lupus are encouraged to discuss UV protection with their healthcare team and to learn what protective measures are appropriate for them.
Learn more through #Lupus100:
f.mtr.cool/lptcxwpubz
You can also ask #lupusgpt or #easylupus questions about lupus and UV light:
f.mtr.cool/nfccvjbbep
f.mtr.cool/clxgzteshl
Information on Lupus100 is available in several languages:
🇩🇰 f.mtr.cool/lkmkxyanqw
🇩🇪 f.mtr.cool/jmyfwcgsae
🇪🇸 f.mtr.cool/kdixsnubvi
🇬🇷 f.mtr.cool/dpqkzkejog
🇫🇷 f.mtr.cool/lwhtfzpnte
🇮🇹 f.mtr.cool/utsezhzrqp
🇳🇱 f.mtr.cool/sbfwktzpdr
🇷🇴 f.mtr.cool/xbcdhkqyud
🇫🇮 f.mtr.cool/hkfvtmjobx
🇺🇦 f.mtr.cool/cgpmlevqlb
#lupusuvprotection
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☀️ #heatwave can affect your health, especially if you have #lupus.
The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.
Has your doctor ever spoken to you about how to stay safe during extreme heat?
Reliable information can help you plan ahead and protect your health.
Before and during a heatwave:
✅ Plan essential outdoor activities for cooler hours
✅ Stay in the shade and keep indoor spaces as cool as possible
✅ Drink water regularly
✅ Avoid alcohol and limit sugary or caffeinated drinks
✅ Protect yourself from UV light if you need to go outside
✅ Check how your medicines should be stored
✅ Seek medical advice if you experience unusual symptoms or if symptoms persist
❓ Questions about lupus, UV and heat?
Explore reliable lupus information through #Lupus100, #lupusgpt or #easylupus. Free, multilingual, anonymous tools and resources, validated by lupologists and patients.
Save this post and share it with someone who may need it this summer.
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🎥 Missed our #EULAR2026 recap webinar?
The recording is now available on YouTube.
In this session, Lupus Europe volunteers bring back some key lupus-related learnings from EULAR 2026 from fatigue, pain & lived experience, to LupusGPT, access, youth co-creation and new research directions.
A huge thank you again to everyone who helped make this webinar possible.
Watch here:
f.mtr.cool/ncqeapqfjt
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☀️ UV light and lupus: it is 𝗻𝗼𝘁 ❞𝗷𝘂𝘀𝘁 𝘀𝘂𝗻𝘀𝗵𝗶𝗻𝗲❞.
🔴 For many people living with lupus, sun and UV exposure can affect much more than Summer plans.
In the Lupus Europe Living with SLE in 2020 survey, photosensitivity was 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.
😔 Furthermore, in Lupus Europe’s Swiss Knife Survey 2024, 25.8% of respondents said 𝘀𝘂𝗻 𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗲𝗱 𝘁𝗵𝗲𝗺 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁.
💥 The potential effect of the UV rays in lupus can influence when people go out, what they wear, how they plan holidays, whether they join outdoor activities, and how much they need to explain their choices to others.
𝗧𝗵𝗮𝘁 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.
❌ Sun sensitivity may sometimes be seen as a “minor” symptom, but 𝗶𝘁𝘀 𝗶𝗺𝗽𝗮𝗰𝘁 𝗰𝗮𝗻 𝗯𝗲 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁. It can affect work, education, personal relationships, social life and mental wellbeing. It can also affect the people around someone living with lupus, from family and friends to colleagues who may not always understand why plans need to change.
Have questions about lupus and UV light?
Explore reliable information through #Lupus100 or ask #LupusGPT or #EasyLupus.
Swiss Knife Survey 2024:
f.mtr.cool/nsgolzfaek
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