Category: Uncategorized

CONFINED AT HOME ? Make the next few minutes useful by answering this short research on Patient Education!

LUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]

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HELP US COLLECT VALUABLE DATA FROM PEOPLE LIVING WITH LUPUS

As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]

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EULAR PARE 2019, the Highlights

The 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]

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The World Lupus Federation seeks your quick input

The World Lupus Federation asks people with lupus to take a 12-question survey about the emotional effects of lupus and about clinical trials. We must recruit 500 people with lupus to take this brief survey. There are only 12 questions. All responses are confidential. The results will be published on World Lupus Day, May 10. Use […]

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Apply to the EULAR PARE: Knowledge transfer programme

Every year, EULAR grants a set amount to its knowledge transfer programme. The programme is designed to support patient organisations that wish to further develop their skillset through applying lessons learned by other organisations in the EULAR network. This knowledge transfer is mainly done through visiting an organisation in another country. The programme is open […]

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KICK LUPUS – SUMMER 2018 CONTEST

LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*) There are so many ways to Kick Lupus a little (or a lot) further away!     This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better […]

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ERN ReCONNET questionnaire

LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]

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Eular 2018

Today is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]

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LUPUS EUROPE
2 days ago
LUPUS EUROPE

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health! ... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge! 🤔Can you guess our October theme based on this sneak peek image? 👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!
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2 CommentsComment on Facebook

Thank you! Great moment indeed.

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE
4 days ago
LUPUS EUROPE

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay ... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people. 👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768 🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus. 1️⃣ Always talk to your physician about preventive measures. 2️⃣ Work to minimise risk factors ⤵️ - Dont smoke🚭 - Practise exercise🏃‍♂️ - Have a healthy diet🍏 #WorldHeartDayImage attachment
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I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE
7 days ago
LUPUS EUROPE

⁉️Do you have depression? If you do, know that it is frequent in #lupus patients.

🚨Our 2020 Living with Lupus survey unveiled that #depression ranks among the most common symptoms in lupus patients.

⚠️ Out of 683 patients (16.7%) who identified anxiety or depression as one of their most bothersome symptoms, only 315 (46.1%) reported using antidepressant or anxiolytic medication.

lupus.bmj.com/content/8/1/e000469

🔬 Recent studies support these findings, revealing that depressive symptoms affect anywhere from 11% to 71% of patients with systemic lupus erythematosus (SLE).

🔴 This common neuropsychiatric manifestation can be due to:

1️⃣ The illness itself.
2️⃣ Some of its treatments.
3️⃣ Other clinical variables, like fatigue or pain.
4️⃣ Sociodemographic factors.

👉 A specific study highlighted that #SLE patients report worse health-related quality of life, fatigue, anxiety, depression, and sleep quality compared to the general population and other chronic diseases.

‼️ Understanding these realities profoundly is essential for providing lupus patients with the necessary support and holistic care.

✅ It's crucial to encourage dialogue and action around mental health.

🌈 The #kicklupus campaign is committed to shedding light on these issues and driving positive change in the lives of those affected by lupus.

For more information and support, visit the member organisations section on our website and reach out to your national lupus organisation.

www.lupus-europe.org/lupus-members/ ... See MoreSee Less

⁉️Do you have depression? If you do, know that it is frequent in #lupus patients. 🚨Our 2020 Living with Lupus survey unveiled that #depression ranks among the most common symptoms in lupus patients. ⚠️ Out of 683 patients (16.7%) who identified anxiety or depression as one of their most bothersome symptoms, only 315 (46.1%) reported using antidepressant or anxiolytic medication. https://lupus.bmj.com/content/8/1/e000469 🔬 Recent studies support these findings, revealing that depressive symptoms affect anywhere from 11% to 71% of patients with systemic lupus erythematosus (SLE). 🔴 This common neuropsychiatric manifestation can be due to: 1️⃣ The illness itself. 2️⃣ Some of its treatments. 3️⃣ Other clinical variables, like fatigue or pain. 4️⃣ Sociodemographic factors. 👉 A specific study highlighted that #SLE patients report worse health-related quality of life, fatigue, anxiety, depression, and sleep quality compared to the general population and other chronic diseases. ‼️ Understanding these realities profoundly is essential for providing lupus patients with the necessary support and holistic care. ✅ Its crucial to encourage dialogue and action around mental health. 🌈 The #KickLupus campaign is committed to shedding light on these issues and driving positive change in the lives of those affected by lupus. For more information and support, visit the member organisations section on our website and reach out to your national lupus organisation. https://www.lupus-europe.org/lupus-members/Image attachmentImage attachment+1Image attachment
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LUPUS EUROPE
1 week ago
LUPUS EUROPE

🦋 Participate in the LUPPOS Survey!

Help health professionals understand your attitudes towards steroid use in #SLE treatment.

📊 This study aims to identify the habits and attitudes towards the use and withdrawal of glucocorticoids among those living with SLE.

💬 The survey is available in English, French, Spanish, Portuguese, and Italian.

Your responses will help improve patient care.

🔗 Participate and share your valuable insights:

🇬🇧English: forms.gle/QajmuT7AtTZw1YeaA
🇫🇷French: forms.gle/LzJ9ZNPzejToveWX9
🇪🇸Spanish: forms.gle/U78xb3CrdPr7ZUPh7
🇵🇹Portuguese: forms.gle/Ej5jmc5SHezbt7Cn7
🇮🇹Italian: forms.gle/rgByP8KZDMLY8f2V9 ... See MoreSee Less

🦋 Participate in the LUPPOS Survey! Help health professionals understand your attitudes towards steroid use in #SLE treatment. 📊 This study aims to identify the habits and attitudes towards the use and withdrawal of glucocorticoids among those living with SLE. 💬 The survey is available in English, French, Spanish, Portuguese, and Italian. Your responses will help improve patient care. 🔗 Participate and share your valuable insights: 🇬🇧English: https://forms.gle/QajmuT7AtTZw1YeaA 🇫🇷French: https://forms.gle/LzJ9ZNPzejToveWX9 🇪🇸Spanish: https://forms.gle/U78xb3CrdPr7ZUPh7 🇵🇹Portuguese: https://forms.gle/Ej5jmc5SHezbt7Cn7 🇮🇹Italian: https://forms.gle/rgByP8KZDMLY8f2V9
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