My 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 to share it with you. My dream was to run a 5km race wearing the jersey of the Cyprus League of People with Rheumatism (CYPLER) and to run for all people with rheumatic, musculoskeletal diseases. I also want to share with you my experience and my thoughts during the race. With faith in myself, with the support of the wider association (CYPLER) as well as the members of the lupus group I made my dream come true. My biggest “problem” all these years was my lack of self-confidence, as I was very late to join our association because of my beliefs. I will not forget my first acquaintance with the lupus group in the furniture restoration workshop; how much strength and confidence I gained from this workshop. Doing things outside the norm gave me pleasure and strength!

 

Running towards the dream

 

There I was walking in the park one day, watching others running. The thought came to me that with the right guidance I could do what I have been dreaming of for years, namely, to run long distance. To run a race, say 5km.

 

 

During the duration of the race, because it took place at10.45 am the heat and the sun were too much, it “stole” my energy and made the whole run hopelessly endless. When I came upon the first “refuelling station” that had water, I took a small sip to quench my thirst and kept the bottle for later. The heat in my body combined with the heat outside was becoming unbearable. In my mind were so many thoughts, but I was mainly thinking of the girls at the association (CYPLER), the people with lupus who cheered me on in this effort shouting “Melina go, go, go Melina go goooooo”. I shouted it too with so much intensity that I even encouraged my fellow runners and I also kept running.

 

Lupus patient running in the 5km Run Limassol 2024 race, waving and smilingI then realised I had passed the 2.5 km mark and that there would be another refuelling station soon! As soon as I got there, I took off my hat and doused myself with water.  I then tried to stay on the side of the running path that was in the shade.

 

When I saw the finish arch, I gathered all my strength and started to run harder! In the last few meters, I felt so exhausted. But the joy of completing the race was great! When I reached the finish line and actually realised that I finished, it struck me that, for that race, I overcame so many of the obstacles a lupus patient can have in her life: sun, heat, dust, the cold rainy days (the time of preparation), the fatigue, the mental strain of effort. I found a solution to all the problems that happened throughout the race. But the race isn’t a 5km one; this race is our whole life. The winner is not only the one who finishes first, but also the one who fights until the end with all their strength.

 

The Dream Continues

At this point I want to say that the dream continues!! I have been invited through a sports group on Facebook to another race in Crete; have signed up for the 10km and I have already started preparing! I will continue to run for all of you! Dreams are many steps taken together and they only become a reality one step at a time. Once upon a time I could not climb a single floor without stopping two or three times due to fatigue, but now I can!

 

Written by Melina Georgiou, Member of the CYPLER Lupus Group 

 

Disclaimer: The views expressed in this article belong to the author. Please note that sun exposure is generally contraindicated for individuals with lupus. For more information, read: Can I sunbathe with lupus

 

 

 

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☀️ Good morning from beautiful London!

#Eular2026 is here, and so are we‼️

💬 You may already know #lupusgpt. You may have read the paper in The Lancet Rheumatology. You may have tried the tool, shared it with a patient, or recommended it to a colleague.

📊 But there is more. More to do. More lessons learned from two years of building something genuinely patient-led. More to understand about what happens when patients, clinicians, and AI specialists work together from the very first question.

🦋 This week, we will be sharing it all.

#lupusgpt: more than you think. Further than you imagined.
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📅 Tomorrow, the EULAR Congress begins!

🌍 #Eular2026 starts tomorrow, and Lupus Europe will be there!

🦋 We will be representing the patient voice, following the latest research, and sharing key updates with our community throughout the week.

Stay tuned for live updates, session highlights, and much more.

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📅 Tomorrow, the E

🔴 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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