I discovered in 2016 that I love running. And I created a special taste for competition. I am a master athlete and I have Lupus. I was diagnosed with Lupus at the age of 15 and I am an athlete since the age of 35. Now I’m 40 and I can’t stop running.

I had my first international experience in 2017, at the European Masters Championship in Aarhus, Denmark. I managed to get a good performance achieving a new Personal Best in the distances of 5000 m and half-marathon.

Since then, I have made a point of participating in Masters Championships defending my country and taking the cause across borders – awareness of Lupus and that we can and should kick it!

In 2019 I had my first scare. I decided to participate in the World Masters Championship in Malaga, Spain. The races I chose were the 10.000 m and the half-marathon. The 10.000 m on track was my first race of the championship and I managed to overcome myself under a hellish heat where I improved my time in the distance.

Meanwhile, during the interval of days until the half-marathon (where I was betting a good mark), I got sick because of insect bites. With fever and an acute attack of allergy I spent the days the best I could. When the day of the race came, I knew I was not in a position to achieve the goal. After they gave the starting shot my body “shut down”!

My legs weighed tons … I couldn’t breathe well … I started thinking about giving up! I didn’t give up because I didn’t want to leave the national team unclassified. I went to the end in agony! It was a bad experience that left me wondering if it would be worth it to continue competing and … running.

I returned to Portugal in a terrible physical and psychological condition.  To give up… I just thought about giving up.

In the first 3 weeks I rested without running. After 3 weeks my body started to ask for “movement” and, step-by-step I returned to training. I had the support from family and friends who did not let me give up on my big goal – the Marathon.

I started again with the marathon in my mind. The date was set – January 19, 2020, in Funchal, Madeira, the day of my first marathon. 42 kms to run and finish … that was the goal.

Even though I know that Lupus doesn´t let me train in the winter I wanted to take the risk. I missed training days for being sick, others for exhaustion and others for professional reasons. It was difficult but I went ahead.

When the day of the marathon arrived, I felt confident and at the same time afraid. I was optimistic because I believed in the work done by me and my coach and frightened because I was stepping into the unknown … I had never run so many kilometres … I didn’t know how my body would react.

They gave the starting shot and I knew it was now or never. I was passing km for km fulfilling the pace planned by the coach. At 35 km I started having cramps and I thought: “if you continue at this pace you will not end the race. So, you must slow down and manage the pain”.

36, 37, 38, 39, 40, 41 …. and 42 km in 3h21m was the time of my first marathon!

What I really kept from this experience was that I managed to run a marathon and it got me in a state of great happiness and made me very proud.

Today I can say that I am a marathon runner and Lupus didn’t win!

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🎥 Last week, during #EULAR2026, the Chair of Lupus Europe's Board of Directors, Jeanette Andersen, was interviewed on EULAR TV about #LupusGPT.

Watch as she explains what #LupusGPT is and why reliable, understandable lupus information is important for patients and for lupus care.

🦋 #LupusGPT is patient-led, built with clinicians, patients and IT experts, and grounded in trusted lupus resources.

#LupusGPT is not a replacement for healthcare professionals, but it helps people better understand lupus information and prepare more informed questions for their physicians.

📺 Watch the full interview on the EULAR YouTube channel:

www.youtube.com/watch?v=plqZt7J142I

Thank you EULAR for giving space to patient-led innovation on EULAR TV!
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📣Don’t forget!

Our #EULAR2026 Recap Webinar is coming up on June 15 at 19:00 CET,

Learn some key highlights from one of our most exciting congresses in recent years, including scientific insights brought directly by speakers through short videos.

📩 Register now! email secretariat@lupus-europe.org
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📣Don’t forget!

✅ #EULAR2026 has finished, but we still have a lot to tell you!

🦋 Day 2 at the EULAR Congress showed why patient involvement matters across research, care, digital innovation and outcome measurement.

🥰 Lupus Europe was proud to contribute to several key sessions.

💬 Zoe Karakikla-Mitsakou, our General Secretary, presented #LupusGPT and #EasyLupus in the Meet the EULAR Expert session on AI as a partner in care, highlighting patient-led, reliable and accessible digital information.

🌍 Zoe also spoke in the session “Bridging the Gap: Expanding Rheumatology Access for Underserved and Underrepresented Communities”, sharing insights from local patient panel work in Portugal and how patient organisations can help identify real-world barriers to care, especially for people we do not always reach.
Thank you to Dr Daniel Guimaraes de Oliveira for his contribution and support in this important project.

🧩 Our Chair, Jeanette Andersen, delivered an inspiring presentation on non-pharmacological interventions in connective tissue diseases, bringing the patient perspective into discussions on physical activity, and the need for psychosocial support and personalised care beyond medication.

📊 Another highlight of the day was Jeanette co-chairing, together with Prof Laurent Arnaud, the session on measurement of disease activity in SLE clinical trials. The session explored how we measure lupus arthritis, treatment outcomes and remission, and why outcome measures must better reflect the reality of living with lupus.

💫 Our team also followed key sessions and poster tours on epidemiological data for advocacy, access and empowerment, and therapeutic advances in lupus.

And throughout the day, we continued welcoming visitors at the Lupus Europe booth, sharing our projects, tools and conversations with the wider rheumatology community.

Would you like to hear more from our team?

📅 Join our #EULAR2026 recap webinar on 15 June at 19:00 CET, Paris time.

You will hear key takeaways from our team, plus videos from some speakers explaining their presentations in patient-friendly language.

✅ To register, email secretariat@lupus-europe.org
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🤩 #EULAR2026 has been a blast!

Now it’s time to look back at some of the key lupus-related insights, data and messages from this year’s Congress.

Join Lupus Europe for our EULAR 2026 recap webinar:

📅 June 15
🕖 19:00 CET
📍 Zoom

✅ Register by sending an email to [secretariat@lupus-europe.org](mailto:secretariat@lupus-europe.org)

Don’t miss it!
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🤩 #EULAR2026 has
LUPUS EUROPE Uniting people with Lupus throughout Europe
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