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!

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”

That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.

Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.

🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.

📖 Read the study:
lupus.bmj.com/content/13/2/e002148
... See MoreSee Less

‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.
... See MoreSee Less

‼️Today is #Worl

🧠 Brain fog is real.

For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.

✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.

🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.

lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
... See MoreSee Less

🦋 Understanding lupus is crucial for effective management and self-management.

💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.

🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an overall knowledge score

💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.

📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.

These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.

SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.

🔗 Complete SLAKE today and let us know what you think!

lupusresearch.limequery.org/775349
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send