Nearly there – Andreas running for lupus

t-shirt-copy

2 weeks to go, Running for Lupus

Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo

Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will see the real thing in the next post. I also received a new US visa to be allowed to enter the country  – remember my previous Visa was in the passport that got stolen last month. Additionally, I managed to apply for a replacement South Africa Permit – you see, that was also on the stolen passport! Without that I might not have been allowed to travel outside the country. The most important thing is that I did everything necessary to be able to attend and run in the New York Marathon for Lupus. And here I am, 2 weeks before the race, blogging.  My only concern now is my knee injury that doesn’t seem to let go. But I will fight that as well. Also, stay tuned for the next post where I will share how to follow me during the race using a mobile app.

Another interesting update I was told last week is that I was selected to be a flag bearer (for my country – Cyprus) during the New York Marathon opening ceremony on the 4th of November, 2 days before the race. Because of that, Lupus Cyprus has decided to dedicate the Lupus month of October to myself and the effort to raise Lupus awareness. I feel honored to represent my country and show that being a Lupus Warrior doesn’t mean your life goals are put aside.

On different note, the European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. Lupus Europe has been closely involved in this important project. The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. Find more information here, and participate in the survey here.

Last, check out Lupus Europe’s Goodbye post to Würzburg – 2016 Lupus Europe convention here.

Below is my training for the previous 2 weeks and this coming week

Monday 10th:        5km run
Tuesday 11th:        rest
Wednesday 12th:    5km run
Thursday 13th:    1km swim
Friday 14th:        20km cycle
Saturday 15th:        5km run
Sunday 16th:        15km run
Monday 17th:        rest
Tuesday 18th:        30km cycle
Wednesday 19th:    1km swim
Thursday 20th:    rest
Friday 21st:        5km run
Saturday 22nd:    5km run
Sunday 23rd:        10km run, 30km cycle
Monday 24th:        1km swim
Tuesday 25th:        5km run
Wednesday 26th:    10km run
Thursday 27th:    30km cycle
Friday 28th:        rest
Saturday 29th:        5km run
Sunday 30th:        rest

For Andreas’ full marathon story https://lupus-europe-blog.org/run-with-andreas/

 

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Alain Cornet

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    LUPUS EUROPE
    5 days ago
    LUPUS EUROPE

    🇮🇸 Spotlight on Lupus Iceland!

    At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

    Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

    📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

    💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

    💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

    👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!     ... See MoreSee Less

    🇮🇸 Spotlight on Lupus Iceland! At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions. Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍 📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland. 💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network. 💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe. 👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🇧🇪 Spotlight on Lupus Belgium!

    During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

    🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.

    🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

    Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.

    🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

    📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

    🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

    🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

    📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!

    💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.     ... See MoreSee Less

    🇧🇪 Spotlight on Lupus Belgium! During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus. 🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country. 🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community. Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and well be glad to help. 🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year. 📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience. 🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus. 🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected. 📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- dont miss out! 💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.Image attachmentImage attachment+3Image attachment
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    • likes 13
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    📢 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

    📢 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! 🔗 https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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    LUPUS EUROPE
    3 weeks ago
    LUPUS EUROPE

    🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

    🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

    🤔 How is this possible? These factors don't cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

    💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

    According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

    🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
    🔹 Low health literacy and cultural stigma make treatment adherence harder.
    🔹 Living in rural areas limits access to specialised care.
    🔹 Financial barriers and social isolation worsen both physical and mental health.

    These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

    ‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

    👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

    Read the full study: www.sciencedirect.com/science/article/pii/S1568997225001478     ... See MoreSee Less

    🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes. 🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do. 🤔 How is this possible? These factors dont cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience. 💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time. According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example: 🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis. 🔹 Low health literacy and cultural stigma make treatment adherence harder. 🔹 Living in rural areas limits access to specialised care. 🔹 Financial barriers and social isolation worsen both physical and mental health. These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post. ‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images). 👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus. Read the full study: https://www.sciencedirect.com/science/article/pii/S1568997225001478Image attachmentImage attachment+6Image attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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