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
LUPUS EUROPE

#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

rarediseases.org/
... See MoreSee Less

#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 

https://rarediseases.org/
2 days ago
LUPUS EUROPE

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 Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, 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!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

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 Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, 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! 

#rarediseaseday2024  #ShareYourColoursImage attachmentImage attachment+2Image attachment
3 days ago
LUPUS EUROPE

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis... But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If you're living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: bit.ly/SLEStories_Danish
🇳🇱Dutch: bit.ly/SLEStories_Dutch2
🇬🇧English: buff.ly/3uExnRz
🇫🇮Finnish: bit.ly/SLEStories_Finnish
🇬🇷Greek: bit.ly/SLEStories_Greek
🇮🇸Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹Italian: bit.ly/SLEStories_Italian
🇱🇹Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱Polish: bit.ly/SLEStories_Polish
🇵🇹 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸Spanish: bit.ly/SLEStories_Spanish
🇸🇰Slovak: bit.ly/SLEStories_Slovak
🇫🇷French: buff.ly/3IfuJVf
🇩🇪German: buff.ly/3IfHf7e

Your story can lead to significant shifts in lupus care. Let's come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe.

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
... See MoreSee Less

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis...  But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #Lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If youre living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and  improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: https://bit.ly/SLEStories_Danish 
🇳🇱Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧English: https://buff.ly/3uExnRz 
🇫🇮Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷Greek: https://bit.ly/SLEStories_Greek
🇮🇸Icelandic: https://bit.ly/SLEStories_Icelandic
🇮🇹Italian: https://bit.ly/SLEStories_Italian
🇱🇹Lithuanian: https://bit.ly/SLEStories_Lithuanian
🇵🇱Polish: https://bit.ly/SLEStories_Polish
🇵🇹 Portuguese: https://bit.ly/SLEStories_Portuguese
🇪🇸Spanish: https://bit.ly/SLEStories_Spanish
🇸🇰Slovak: https://bit.ly/SLEStories_Slovak
🇫🇷French: https://buff.ly/3IfuJVf 
🇩🇪German: https://buff.ly/3IfHf7e 

Your story can lead to significant shifts in lupus care. Lets come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe. 

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
3 days ago
LUPUS EUROPE

🚨 Tomorrow is #RareDiseaseDay!

🙌 Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours

buff.ly/49NLliU
... See MoreSee Less

🚨 Tomorrow is #RareDiseaseDay!

🙌 Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours 

https://buff.ly/49NLliU