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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4 days ago

🦋 How much do you really know about lupus?

Stop wondering — find out now with SLAKE, the Systemic Lupus Assessment score for Essential Knowledge.

✔️ Quick and easy
✔️ Just a few minutes
✔️ Available in 20 languages
✔️ Get your personal lupus knowledge score

SLAKE is not a test — it’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more.

And if you want to keep learning, remember to visit #Lupus100 and #LupusGPT — two reliable resources to improve your lupus knowledge.

Don’t wait any longer.
👉 Click the link, choose your language, and take SLAKE today!

maladie-autoimmune.fr/SLAKE/
... See MoreSee Less

6 days ago

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! We're excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
... See MoreSee Less

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! Were excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
#HappyEaster
2 weeks ago

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients' priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!
... See MoreSee Less

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!Image attachmentImage attachment+3Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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