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’.

week0 copy

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.
facebookShare on Facebook
TwitterTweet
FollowFollow us

About the author

Alain Cornet

    Live Facebook Feed

    Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
    Author Avatar
    LUPUS EUROPE
    21 hours ago

    ☀️ As we close our #LupusUVprotection campaign, here is one important reminder:

    👉 UV protection in lupus is not only about sunny beach days.

    😶‍🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.

    ‼️ That is why clear, reliable information matters.

    Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:

    🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
    Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
    lupus100.org/en/questions/can-i-sunbathe-with-lupus

    Created with lupus experts & patients. Available in 19 languages.

    🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
    A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
    lupusgpt.org/

    🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
    Like LupusGPT, but designed to make the answers even easier to understand:
    easy.lupusgpt.org/

    🦋 Because lupus does not only affect clinic appointments. It affects everyday life.

    ✅ Stay informed. Ask questions. Use reliable resources.     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on LinkedIn Share by Email
    View Comments likes 4 Shares: 1 Comments: 0

    0 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    1 week ago

    ✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in #SLE.

    🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.

    🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.

    🤔 But what is DORIS?

    DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.

    🐠 DORIS+ builds on that foundation and explores the concept of deep remission.

    💁‍♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.

    This matters because remission is an important concept for research, clinical care and people living with lupus.

    🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.

    😃 We will keep you updated!     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on LinkedIn Share by Email
    View Comments likes 28 Shares: 6 Comments: 1

    1 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    1 week ago

    ☀️ 𝗨𝗩 𝗹𝗶𝗴𝗵𝘁 𝗮𝗻𝗱 𝗹𝘂𝗽𝘂𝘀: 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗨𝗩𝗔 𝗮𝗻𝗱 𝗨𝗩𝗕 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.

    Ultraviolet light is one of the components of solar radiation. In lupus, UV exposure can contribute to 𝘄𝗼𝗿𝘀𝗲𝗻𝗶𝗻𝗴 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗼𝗿 𝘁𝗿𝗶𝗴𝗴𝗲𝗿𝗶𝗻𝗴 𝗳𝗹𝗮𝗿𝗲𝘀 in some people.

    💁‍♀️ That is why we are launching our #lupusuvprotection campaign: to raise awareness of the impact UV light can have on people living with lupus, especially during summer.

    🦋 Photosensitivity is one of the most common manifestations of systemic lupus erythematosus. In the Lupus Europe Living with SLE in 2020 survey, 𝗽𝗵𝗼𝘁𝗼𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝘄𝗮𝘀 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.

    But UV-related lupus symptoms do not always affect only the skin. UV exposure has also been associated with systemic symptoms such as 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗮𝗻𝗱 𝗷𝗼𝗶𝗻𝘁 𝗽𝗮𝗶𝗻, and may contribute to 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 in some people.

    So what is the difference?

    🔴 𝗨𝗩𝗕 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
    🔸 Is mainly associated with sunburn.
    🔸 Its intensity fluctuates during the day.
    🔸 It is usually strongest around the middle of the day.
    🔸 It mainly affects the outer layers of the skin.

    🔴 𝗨𝗩𝗔 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
    🔸 Penetrates deeper into the skin.
    🔸 Is associated with skin ageing.
    🔸 Its intensity is more constant during the day.
    🔸 It can penetrate clouds and windows.

    🌡️ 𝗜𝗻𝗳𝗿𝗮𝗿𝗲𝗱 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
    🔸 Is perceived as heat.
    🔸 Feeling less heat does not necessarily mean there is no UV exposure.

    ‼️ This is important because UV exposure can still happen even when the sun does not feel strong. UVA rays can pass through clouds and some types of glass, which means UV protection may still be relevant on cloudy days, near windows, while travelling by car or during everyday activities.

    Although not everyone with lupus is photosensitive, people living with lupus are encouraged to discuss UV protection with their healthcare team and to learn what protective measures are appropriate for them.

    Learn more through #Lupus100:
    f.mtr.cool/lptcxwpubz

    You can also ask #lupusgpt or #easylupus questions about lupus and UV light:
    f.mtr.cool/nfccvjbbep
    f.mtr.cool/clxgzteshl

    Information on Lupus100 is available in several languages:

    🇩🇰 f.mtr.cool/lkmkxyanqw
    🇩🇪 f.mtr.cool/jmyfwcgsae
    🇪🇸 f.mtr.cool/kdixsnubvi
    🇬🇷 f.mtr.cool/dpqkzkejog
    🇫🇷 f.mtr.cool/lwhtfzpnte
    🇮🇹 f.mtr.cool/utsezhzrqp
    🇳🇱 f.mtr.cool/sbfwktzpdr
    🇷🇴 f.mtr.cool/xbcdhkqyud
    🇫🇮 f.mtr.cool/hkfvtmjobx
    🇺🇦 f.mtr.cool/cgpmlevqlb

    #lupusuvprotection     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on LinkedIn Share by Email
    View Comments likes love 15 Shares: 8 Comments: 5

    5 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    2 weeks ago

    ☀️ #heatwave can affect your health, especially if you have #lupus.

    The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.

    Has your doctor ever spoken to you about how to stay safe during extreme heat?

    Reliable information can help you plan ahead and protect your health.

    Before and during a heatwave:

    ✅ Plan essential outdoor activities for cooler hours
    ✅ Stay in the shade and keep indoor spaces as cool as possible
    ✅ Drink water regularly
    ✅ Avoid alcohol and limit sugary or caffeinated drinks
    ✅ Protect yourself from UV light if you need to go outside
    ✅ Check how your medicines should be stored
    ✅ Seek medical advice if you experience unusual symptoms or if symptoms persist

    ❓ Questions about lupus, UV and heat?

    Explore reliable lupus information through #Lupus100, #lupusgpt or #easylupus. Free, multilingual, anonymous tools and resources, validated by lupologists and patients.

    Save this post and share it with someone who may need it this summer.     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on LinkedIn Share by Email
    View Comments likes love 17 Shares: 9 Comments: 0

    0 CommentsComment on Facebook

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send