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
    20 hours ago

    🇸🇪 Spotlight on Lupus Sweden!

    💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

    💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

    📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

    🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

    🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

    👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!     ... See MoreSee Less

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    LUPUS EUROPE
    3 days ago

    📢 Calling all #lupus patients!

    🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

    ✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

    Your insights can make a difference and help shape future policies that support people living with this condition.

    🙏 Thanks for sharing your experience!

    www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm     ... See MoreSee Less

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    LUPUS EUROPE
    7 days ago

    📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

    The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

    💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

    🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

    🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

    Try it now: lupusgpt.org/     ... See MoreSee Less

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    1 week ago

    🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

    In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

    🔹 57.9% of respondents said SLE negatively affected their careers.
    🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
    🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

    🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

    🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

    #WorldDisabilityDay
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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