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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Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #RareDiseaseDay!

#ShareYourColours
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#lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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