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
    13 hours ago

    🛑 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     ... See MoreSee Less

    🛑 Lupus is a compImage attachmentImage attachment
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    LUPUS EUROPE
    3 days ago

    📣 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     ... See MoreSee Less

    📣 Upcoming ERN RE
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    LUPUS EUROPE
    1 week ago

    🚨 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     ... See MoreSee Less

    🚨 New publication
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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