LUPUS EUROPE

23/07/2025

🔦 MYTH #2: “UV light only comes from the sun.”

❌ False.

Most people think about sunlight when they hear “UV radiation”. However, under certain circumstances, even indoor lighting can expose sensitive skin to UV radiation, especially if you have lupus and are photosensitive.

Did you know that UV light is also emitted by artificial sources, such as the following?

💡 Fluorescent and halogen lights.
🧪 Some phototherapy lamps.
💅 Nail curing lamps.
🏥 Some medical equipment (e.g. dental or dermatology devices).

📌 Exposure to any source of UV radiation — including the ones listed above — can have a negative impact on some people living with lupus. That’s why it’s so important to protect yourself not only from the sun, but also from other potential UV sources in your daily life.

💬 Did anyone ever tell you that indoor lights could be a problem?
💬 Have you ever noticed symptoms after being indoors?

For more information about artificial light and lupus, you can read the Lupus UK Guide to Artificial Lighting: https://lupusuk.org.uk/a-guide-to-artificial-lighting/

22/07/2025

🧴 MYTH #1: “Putting sunscreen on your face is enough.”

❌ No, it’s not.

If you have lupus, UV protection should cover all exposed skin, not just your face.

☀️ UV rays can affect any exposed area: arms, hands, chest, neck, ears... And can even pe*****te certain fabrics and glass surfaces.

✅ Use broad-spectrum SPF 50+ on:

✔️ Face
✔️ Neck
✔️ Ears
✔️ Arms and hands
✔️ Any other exposed areas

And don’t forget to reapply every 2 hours, after sweating or getting wet.

📣 Remember! UV exposure could trigger lupus flares, even if there's no visible sunburn.

💬 Do you apply sunscreen daily? What areas do you tend to forget?

21/07/2025

🌞 Do you think you know everything about UV light and lupus? Let's put your knowledge to the test!

🏖️ This week, we’re debunking common myths about UV exposure and — because protecting yourself goes way beyond just applying sunscreen at the beach 😉.

But before we begin, we want to hear from you:

💬 Did your doctor ever explain how UV light may affect lupus, and how you can protect yourself?
💬 What do you wish doctors had told you about UV exposure and lupus… but didn’t?

👇 Drop your answers in the comments!

17/07/2025

😨 Did you miss our debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our page!

https://www.facebook.com/LupusEurope/videos/1257813502412444

14/07/2025

‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

😊 Share your experiences and how you & UV light in your daily life

11/07/2025

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!

10/07/2025

🌟Thank you to all who attended our debrief webinar!

🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

Stay tuned for more news and updates & don't forget to subscribe to our newsletter! https://www.lupus-europe.org/emails/

10/07/2025

10/07/2025

We are experiencing technical difficulties with our EULAR 2025 webinar and Facebook live this evening - do bear with us as we try to resolve this.

Regardless of Facebook live status, the webinar recording will be available in its entirety very soon after today.

10/07/2025

⏰ Just 1 hour left for our highlights webinar!

😨 You haven't registered yet? Don't worry! We have great news for you!

✅ You can still catch all the insights live on our page!

Join us at 18h CET to explore some key takeaways from the Congress!

09/07/2025

🌟Our highlights webinar is tomorrow!

👨‍⚕️Some of the presenters will share the main takeaways from their talks.

🦋Also, some of our volunteers and PAN members will share their insights from the Congress.

Don’t miss this opportunity!

Register now by ✉️ secretariat@lupus-europe.org

07/07/2025

😃 Yes! The theme for this month is UV light, which is known to have a direct association with lupus.

☀️ Throughout July, we'll be sharing helpful information to understand the importance of avoiding UV exposure if you have lupus.

🔊 Join us and share how you !