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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We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.

For us, this is not only about a publication. It is about what LupusGPT stands for.

LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.

It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?

That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.

This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.

A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.

And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.

LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.

doi.org/10.1016/S2665-9913(25)00370-4

Read it for free now! You only need to register (registration is completely free and takes 1')
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We are very proud to

🚨 Today is #WORDDAY2026! Which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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🔴 Tomorrow is #WORDDAY2026!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (19 languages):

f.mtr.cool/hnfukbkwdf
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🔴 Tomorrow is #WO

Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

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