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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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

    ✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

    🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

    🤔 So, how can we #kicklupus with prevention?     ... See MoreSee Less

    🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood. ✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition. 🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
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    LUPUS EUROPE
    4 weeks ago
    LUPUS EUROPE

    🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

    🗣️ Your Voice Matters!

    We want to hear from YOU!

    ❓ Are you a volunteer for a lupus patient organisation?

    Your insights are invaluable! 💎

    Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

    Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

    ✍️ You can answer in English or in your own language.

    Ready to share your thoughts?

    🔗 Click the link below and let your voice be heard!

    s.surveylegend.com/-NfBafeCoorOLsOkK1Du

    🤗 Thank you for reading this post and considering answering the survey!

    Together, we can make a huge difference! 💪     ... See MoreSee Less

    Play2023.11.01_Survey volunteers.mp4
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    🤷‍♂️

    LUPUS EUROPE
    4 weeks ago
    LUPUS EUROPE

    📆 New month, new challenge!

    🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

    🤔 Can you guess what this month's theme is all about?

    💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

    🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

    Ready to embark on this journey with us? 💪     ... See MoreSee Less

    📆 New month, new challenge! 🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 🤔 Can you guess what this months theme is all about? 💡 Hint: Its all about implementing measures to help us hold #lupus at bay! 🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. Ready to embark on this journey with us? 💪
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    💪🏻🍀

    LUPUS EUROPE
    1 month ago
    LUPUS EUROPE

    ‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

    🔹Fear
    🔹Lack of trust
    🔹Feeling of unsafety
    🔹Belief in good health
    🔹Lack of recommendations by doctor

    💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

    𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

    One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

    ✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

    𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

    ✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

    Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

    𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

    ✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

    It is crucial this is assessed on a case-by-case basis by your doctor.

    𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

    ✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

    𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

    ✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

    For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

    𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

    ✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

    Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

    🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

    Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

    ard.bmj.com/content/79/1/39     ... See MoreSee Less

    ‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to: 🔹Fear 🔹Lack of trust 🔹Feeling of unsafety 🔹Belief in good health 🔹Lack of recommendations by doctor 💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares One of the most common fears among #lupus patients is the possibility of vaccines causing a flare. ✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks. 𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines ✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important. Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE. 𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines ✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines. It is crucial this is assessed on a case-by-case basis by your doctor. 𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms ✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission ✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease. For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life ✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history. Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 🌏 Help us #KickLupus by raising awareness of the importance of immunisation. Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases: https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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