Zoe Karakikla-MitsakouMy name is Melina and I live in the easternmost, warmest, and sunniest part of Europe, the small island of Cyprus. I have lived with lupus for the last 21 years, most of my life, if you count that I am 37 years old. I have also made a dream come true and I want […]
Zoe Karakikla-MitsakouLupus Europe is set to mark World Lupus Day with a webinar aimed specifically at young people living with lupus. The webinar, “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist,” is scheduled for the 10th of May at 19:00 CET. Why This Webinar Matters Lupus frequently affects […]
🔴Remission doesn't always feel like remission.
📄New editorial in Rheumatology by @gomezg_alvaro & Karakikla-Mitsakou:
In >55% of SLE visits, patients rate the disease as more active than physicians
‼️Patient voice must also shape treatment targets
🔗 https://doi.org/10.1093/rheumatology/keag259
✅ NETWORK analysis of #CART cell therapy and #autoimmune diseases, such as #lupus, RA, #Sjogren, etc 🔎
✅ I've been asked to give a talk on #consensus methodologies, based on my personal experience with the various #lupus recommendations, taskforces and group work I've led over the years 🤝 Happy to share my introductory slide with you 👍
#EULAR2026 is around the corner!
🦋Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.
✅ Are you going to @eular_org? Let's connect! Come to our booth and say hi!
Booth O1
Capital Suite Foyer, Level 3
✅ When doctors recommend a tool, it is because they see their potential.
👩⚕️ In this video, Dr @sarahdyball1 introduces the Lupus Consultation Cards.
🤝 Co-created by doctors and patients, they help patients prepare for their consultation.
https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
🔴 According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain/swelling was reported by 72.8% of people living with #lupus, & 44.6% said it stopped them from living life to the fullest.
🩺 In a lupus consultation, symptoms matter. But so does their impact.
#AiArthritisDay
🗨️Lupus affects men, too! And its impact can be different, both mentally & physically.
The Lupus Consultation Cards for men help prioritise what matters most & support more focused consultations.
🌍Available in 18 languages
📥Free download: https://www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
✅ Thank you @autoimmunitymd for the invitation to talk about challenges in #Lupus. I have the feeling that there is now a significant momentum in #SLE
- NEW treaments on their way
- NEW recommendations for rare manifestations
- LUPUS-ALERT to screen for vulnerabilities etc
🔴 𝐑𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 𝐝𝐨𝐞𝐬𝐧❜𝐭 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐫𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 🔴
This is one of the most important insights from a new editorial just published in Rheumatology.
📋 The editorial responds to a study analysing five years of data from the Amsterdam SLE cohort. The findings are striking:
🔹 In over half of clinical visits, patients rated their disease as more active than their physicians did.
🔹 Even among visits meeting formal remission criteria, more than 1 in 3 patients still reported significant disease burden.
These discrepancies highlight an important gap between how disease activity is measured clinically and how lupus is experienced by patients in daily life
📊 According to LUPUS EUROPE’s Swiss Knife Survey, patients’ definitions of “disease control” often go far beyond normal blood tests. They include 𝗳𝗿𝗲𝗲𝗱𝗼𝗺 𝗳𝗿𝗼𝗺 𝗳𝗹𝗮𝗿𝗲𝘀, 𝘀𝘁𝗮𝗯𝗹𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗼𝗳 𝗹𝗶𝗳𝗲, and the ability 𝗹𝗶𝘃𝗲 𝗮𝘀 𝗻𝗼𝗿𝗺𝗮𝗹𝗹𝘆 𝗮𝘀 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲.
𝗦𝗵𝗮𝗿𝗲 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘄𝗵𝗮𝘁 𝗿𝗲𝗺𝗶𝘀𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗳𝗼𝗿 𝘆𝗼𝘂. Let's make it visible.
The editorial, co-authored by Dr Alvaro Gomez from Karolinska Institutet, and Zoe Karakikla-Mitsakou, LUPUS EUROPE General Secretary, points to several possible ways this might be addressed:
✅ Incorporating patient-reported outcomes into treatment target definitions
✅ Using assessment tools that better integrate patient-reported symptoms
✅ Exploring broader target frameworks that better reflect what meaningful disease control may look like for people living with lupus
This reinforces why people with lupus must be involved from the start in shaping how treatment success is defined, measured, and pursued.
💬 Have you ever been told you are in remission but not felt like it?
Share what remission means for you in the comments. Let’s make it visible.
📖 Read the full editorial: doi.org/10.1093/rheumatology/keag259
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🎉 In six days, we will be at #EULAR2026!
If you haven't heard of EULAR before, it's Europe's largest rheumatology congress 😃.
🌍 Every year in June, EULAR brings together over 13,000 researchers, clinicians, and patient advocates from more than 130 countries, with 170+ scientific sessions.
🦋 Lupus Europe will be there, and we'll be bringing you the latest on lupus from the congress floor.
🎙️ Not only that! Lupus Europe will be an active part of the congress! As in previous years, some of our Board and PAN members will be presenting posters and abstracts, chairing sessions, and taking the stage as speakers.
👀 Stay tuned!
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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗
✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.
👩⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.
🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.
They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused
😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.
💜 A simple tool. A better consultation.
👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:
www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.
💁♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.
🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.
💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.
❌ But lupus is not “just joint pain”.
‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.
💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.
Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).
📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/
#MakeItCount
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