FAQs

FAQs

Lupus is a widespread, chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own connective tissues and organs. These can include joints, kidneys, heart, lungs, brain, blood, muscles and skin. To find out more, go to Lupus100

There are an estimated 350,000 people in Europe with lupus. More than five million people are affected worldwide.

Nine out of ten of those affected are women.

80% of the newly diagnosed are between the ages of 15 and 45.

Certain ethnicities are more likely to develop lupus than others.

No-one knows the true causes of lupus. However genetic and environmental factors play a role. For example, some known triggers are photosensitivity, smoking, cardio-vascular diseases, etc.
To find out more, go to Lupus100

Symptoms include fever, fatigue, loss of appetite, rashes, hair loss (alopecia), swollen glands, sensitivity to light (photosensitivity), joint pain, pericarditis, pleurisy, kidney disease, cognitive problems and others.

No two cases of lupus are the same. Symptoms and severity differ from person to person and even from day to day.

To find out more, go to Lupus100

There is no cure for lupus. Typical treatments include fast-acting steroids (like Prednisolone), which are usually used for the shortest possible period or at the lowest possible dose, together with maintenance medication which acts longer-term, such as anti-malarials, to which immunosuppressants can be added when needed. In June 2012, Belimumab became the first EMA-approved lupus drug treatment in over 50 years. With good management and adherence to medication, lupus can be well controlled for the majority of people.

If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.

To find out more, go to Lupus100

Lupus is one of Europe’s less known chronic, serious diseases. While lupus is rare in some European countries, it is less so in others. Awareness and accurate knowledge about it lags decades behind many other illnesses.

Being a knowledgeable partner in the doctor-patient relationship will help you to self-manage your lupus better and have a better quality of life.

Living a full life with lupus is possible for some, but doing so relies heavily on early diagnosis and consistent treatment.

Studies have produced estimates, that approximately 1 – 8 people per 100,000 are diagnosed with lupus each year.

There are many treatments for lupus’ symptoms, but there is no cure… at least not yet!

Lupus is a widespread, chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own connective tissues and organs. These can include joints, kidneys, heart, lungs, brain, blood, muscles and skin.

There are an estimated 500,000 people in Europe with lupus (EULAR). More than five million people are affected worldwide.

Nine out of ten of those affected are women.

80% of the newly diagnosed are between the ages of 15 and 45.

Certain ethnicities are more likely to develop lupus than others.

No-one knows the true causes of lupus. However genetic and environmental factors play a role. For example, some known triggers are photosensitivity, smoking, cardio-vascular diseases, etc.

Symptoms include fever, fatigue, loss of appetite, rashes, hair loss (alopecia), swollen glands, sensitivity to light (photosensitivity), joint pain, pericarditis, pleurisy, kidney disease, cognitive problems and others.

No two cases of lupus are the same. Symptoms and severity differ from person to person and even from day to day.

There is no cure for lupus. Typical treatments include fast-acting steroids (like Prednisolone), which are usually used for the shortest possible period or at the lowest possible dose, together with maintenance medication which acts longer-term, such as anti-malarials, to which immunosuppressants can be added when needed. In June 2012, Benlysta became the first EMA-approved lupus drug treatment in over 50 years. With good management and adherence to medication, lupus can be well controlled for the majority of people.

If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.

Lupus is one of Europe’s less known chronic, serious diseases. While lupus is rare in some European countries, it is less so in others. Awareness and accurate knowledge about it lags decades behind many other illnesses.

Being a knowledgeable partner in the doctor-patient relationship will help you to self-manage your lupus better and have a better quality of life.

Living a full life with lupus is possible for some, but doing so relies heavily on early diagnosis and consistent treatment.

Studies have produced estimates, that approximately 1 – 8 people per 100,000 are diagnosed with lupus each year.

There are many treatments for lupus’ symptoms, but there is no cure… at least not yet!

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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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🎥 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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🎥 Missed our #EUL