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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🇨🇭 Spotlight on Lupus Switzerland!

At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.

🧑‍🤝‍🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.

🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.

👏 Congratulations to Lupus Switzerland!
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🚨 Have you ever felt that your symptoms or treatment needs were taken less seriously because of your body size?

😪 For many patients, discussions about symptoms, pain, or treatment options are overshadowed by weight. Medication side effects, inflammation, fatigue, and reduced mobility are often ignored, while responsibility is placed on the individual. This can have real consequences for clinical decisions, referrals, and quality of care.

🌈 We are extremely proud of our Chair, Jeanette Andersen, for addressing this reality in her article “More Than a Number: Weight Bias in Rheumatology Care”, published in the special #EMEUNEWS issue on #Obesity and #RheumaticDiseases.

Thank you, Anastasia Madenidou and EMEUNET, for giving space to this important perspective and for inviting Jeanette to contribute.

Read the full article here: emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/
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📌 Reminder for our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

📩 Register now by emailing secretariat@lupus-europe.org

⏳ There’s still time to join!
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📌 Reminder for ou

🇳🇴 Spotlight on Lupus Norway!

At our #LupusConvention, Lupus Norway shared how they continue to support people living with lupus through information, education and strong collaboration with healthcare professionals.

🏥 Every year, the University Hospital in Oslo organises a meeting for patients with connective tissue diseases, including lupus. Lupus Norwa has an information stand that offers reliable resources and answers questions from anyone interested in SLE.

📘 They have also published two new brochures to help patients better understand and manage life with lupus.:
“Practical tips for improving your daily life” and “Find out more about SLE”.

📰 To keep their community informed, Lupus Norway publishes a newsletter twice a year, focusing on key lupus-related topics such as research projects, sun protection, and patient stories. They also share updates about their participation in conferences and meetings, including EULAR, helping members stay up to date and engaged.

👏 Congratulations, and thank you, Lupus Norway, for your commitment. You are a great example of how patient organisations can make a difference
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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