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/

 

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
... See MoreSee Less

🛑 Lupus is a compImage attachmentImage attachment

📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!

➡️ “What is the added value of triple therapy in lupus nephritis” ⬅️

🗓 11 March 2026
⏰ 4:00 p.m. CET (i.e., Paris time).

🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.

Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.

🔎 This webinar will explore:
•⁠ ⁠The scientific rationale for triple therapy.
•⁠ ⁠Current clinical evidence.
•⁠ ⁠What this may mean for outcomes in lupus nephritis.

Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!

Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
... See MoreSee Less

📣 Upcoming ERN RE

🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

‼️ According to Lupus Europe's 2024 Swiss knife survey:

1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.

🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
... See MoreSee Less

🚨 New publication
LUPUS EUROPE Uniting people with Lupus throughout Europe
Send