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.

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.

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, 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.

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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2 days ago

🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

The day was packed with insightful talks and lively discussions on #lupus research and management.

🦋 Some of the key highlights included:

✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
✨ Lupus and cancer by Dr Sasha Bernatsky.
✨ Lupus and infections led by Dr Bregtje Lemkes.
✨ Lupus and vaccinations by Dr Reşit Yıldırım.

🗣️ Plus, enriching panel discussions on these crucial topics!

💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

📲💻 twitter.com/LupusEurope

#LupusAcademy2024
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🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

The day was packed with insightful talks and lively discussions on #lupus research and management.

🦋 Some of the key highlights included:

✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
✨ Lupus and cancer by Dr Sasha Bernatsky.
✨ Lupus and infections led by Dr Bregtje Lemkes.
✨ Lupus and vaccinations by Dr Reşit Yıldırım.

🗣️ Plus, enriching panel discussions on these crucial topics!

💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

 🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

📲💻  https://twitter.com/LupusEurope

#LupusAcademy2024Image attachmentImage attachment+7Image attachment

2 CommentsComment on Facebook

My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.

I’ve been through a similar journey and understand your concern. Natural alternative remedies by Dr osewen solution home is a game changers. I was struggling with Psoriasis,thyroid , Fibromyalgia and chronic pains for 3 years. Have you tried reaching out to any support group or organization for help.I wholeheartedly recommend reaching out to him through his Facebook webpages : www.facebook.com/103770562521545 Your path to recovery may be closer than you think. Sending love 💕 xx

4 days ago

Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the "Living With Lupus in 2024" survey results.

🌟 Continuous education and skill development are essential to fulfil our mission 💪.

❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

🗣️ Our sincere thanks also go to all the patients who participated in our "Living With Lupus in 2024" survey.

🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients' needs.

✅ Let's keep getting involved in research! The more patients respond, the more significant and impactful the data will be.
... See MoreSee Less

Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the Living With Lupus in 2024 survey results.

🌟 Continuous education and skill development are essential to fulfil our mission 💪.

❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

🗣️ Our sincere thanks also go to all the patients who participated in our Living With Lupus in 2024 survey. 

🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients needs. 

✅ Lets keep getting involved in research! The more patients respond, the more significant and impactful the data will be.Image attachmentImage attachment+6Image attachment

2 CommentsComment on Facebook

Congratulations to all of you in Lupus Europe for all the great work you do! 💪👏☝️👌

My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.

5 days ago

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
... See MoreSee Less

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life. 

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being. 

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy. 

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care. 

🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-beingImage attachment
6 days ago

🚨𝐂𝐚𝐥𝐥𝐢𝐧𝐠 𝐚𝐥𝐥 𝐭𝐡𝐨𝐬𝐞 𝐥𝐢𝐯𝐢𝐧𝐠 𝐰𝐢𝐭𝐡 𝐥𝐮𝐩𝐮𝐬🚨

🔸 Patients
🔸 Family and friends
🔸 Health professionals

#lupus is a chronic, heterogeneous and unpredictable disease.

✅ However, there are many treatment options and non-pharmacological interventions that can help keep lupus under control.

😃 Starting this month, we will be sharing 12 of the latter, and we are going to show you how we do it.

Join us in this #kicklupus challenge!

Let's motivate each other and get better together! 💪
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