Run with Andreas

We have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’.

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Week 0/24

Greatest life Challenge, till the next one!

 

A few months ago I ran my first half marathon – I had been in the sport for 5 months before I felt ready to do so. Lots of people may argue that it can be achieved sooner. I decided to take it slow and listen to my body before taking the challenge. Also, I forced myself to run for a cause – to keep me motivated – and dedicated it to my sisters who have been winning against unexpected events in their lives. I have to admit thinking of them during the race worked pretty well, especially in the last kilometers when my gastrocnemius muscles got so tight I could barely run.  But running a half marathon, I believe means you only get half the fun. So I decided to run a full one – 42,2km. Oh and also, why not do it at one of the most popular ones – the New York Marathon!

 

This coming November, 2016, I will be one of the 50,000 lucky ones who will be running through all five boroughs of New York City. I am also a Lupus patient – I was diagnosed in 2007 with symptoms of thrombosis and Raynaud’s syndrome.  Because of that, I would like to run for Lupus and I have joined forces with LUPUS EUROPE (NGO) which will be providing me with a space on its blog to communicate my training news up until I complete the marathon on 6th of November. You have probably guessed right, this will be my motivation in the last kilometres, when I may be experiencing paranoia and I won’t be able to feel my knees or muscles. It’s a win-win, right? Raise awareness and promote an active lifestyle for Lupus as well as get the motivation I need to complete the race 🙂

 

The idea is to share my weekly training plan and dedicate each week to one of the 24 member countries  of LUPUS EUROPE.  It will be a great opportunity to share my experience with each member country, if possible through a Video Call.

This week is dedicated to Denmark. 

“Remember that guy who gave up?  …Neither does anyone else.”

Andreas Panteli

Lupus Warrior

Disclaimer: The above awareness campaign is part of my volunteer work and has nothing to do with my professional activities.
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Alain Cornet

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    LUPUS EUROPE
    2 days ago

    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')     ... See MoreSee Less

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    LUPUS EUROPE
    1 week ago

    🚨 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     ... See MoreSee Less

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    1 week ago

    🔴 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):

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    🔴 Tomorrow is #WO
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    LUPUS EUROPE
    2 weeks ago

    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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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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