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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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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