Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
Alain CornetFor World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog. My life with lupus – living to the […]
Alain CornetHere are a few pics from runs Andreas has taken part in so far… And, once again, a new post has been added to Andreas’ page. To read all about what he’s been doing so far, click here.
☀️ As we close our #LupusUVprotection campaign, remember: reliable information matters.
Have questions about UV light, symptoms & #lupus?
🔹 #LupusGPT: free, anonymous AI tool to help people find reliable, valid lupus information in almost any language
https://lupusgpt.org/
Consensus is not just agreeing on predefined items. #ELICIT starts earlier: eliciting facets experts, incl. patients, see in complex rare-disease concepts, structuring & testing agreement.
For clearer #lupus & rare CTD definitions.
Congrats @Lupusreference, @ERN_ReCONNET et al!
✅ Happy to report that the @ERN_ReCONNET new methodology for eliciting #consensus on high-level complex definitions in the context of rare connective tissue and inflammatory diseases, such as #lupus (ReCONNET #ELICIT) has been ACCEPTED FOR PUBLICATION 👍 More...soon
🤩 Lupus Europe is at #WCRSD2026!
👩Our Vice-Chair & Secretary, @AnnemarieS66, is at this event organised by @ERN_Skin & the René Touraine Foundation.
🟪Skin matters in lupus: in our 2020 survey, skin was affected in 59.4% of respondents.
https://f.mtr.cool/vvmrxzqylv
Solar radiation is composed, among others, of:
🔸 Infrared (IR).
🔸 Visible light.
🔸 Ultraviolet (UV) light, which has 3 types: UVA, UVB and UVC.
🔴 UV radiation is most associated with flare risk and exacerbation of symptoms in #lupus.
Some UV facts 🧵 ⤵️
#LupusUVprotection
😃 Today we are taking part in the DORIS+ meeting in London, alongside clinicians and researchers like @Lupusreference & @ZahiTouma, working on remission in #SLE.
🦋 DORIS+ builds on the original DORIS definition and explores deep remission, with relevance for research, care and
✅ 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
☀️ As we close our #LupusUVprotection campaign, here is one important reminder:
👉 UV protection in lupus is not only about sunny beach days.
😶🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.
‼️ That is why clear, reliable information matters.
Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:
🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
lupus100.org/en/questions/can-i-sunbathe-with-lupus
Created with lupus experts & patients. Available in 19 languages.
🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
lupusgpt.org/
🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
Like LupusGPT, but designed to make the answers even easier to understand:
easy.lupusgpt.org/
🦋 Because lupus does not only affect clinic appointments. It affects everyday life.
✅ Stay informed. Ask questions. Use reliable resources.
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✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in #SLE.
🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.
🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.
🤔 But what is DORIS?
DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.
🐠 DORIS+ builds on that foundation and explores the concept of deep remission.
💁♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.
This matters because remission is an important concept for research, clinical care and people living with lupus.
🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.
😃 We will keep you updated!
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☀️ 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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