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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🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
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🛑 Lupus is a compImage attachmentImage attachment

📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!

➡️ “What is the added value of triple therapy in lupus nephritis” ⬅️

🗓 11 March 2026
⏰ 4:00 p.m. CET (i.e., Paris time).

🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.

Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.

🔎 This webinar will explore:
•⁠ ⁠The scientific rationale for triple therapy.
•⁠ ⁠Current clinical evidence.
•⁠ ⁠What this may mean for outcomes in lupus nephritis.

Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!

Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
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📣 Upcoming ERN RE

🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

‼️ According to Lupus Europe's 2024 Swiss knife survey:

1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.

🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
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🚨 New publication
LUPUS EUROPE Uniting people with Lupus throughout Europe
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