My name is Melina and I live in the easternmost, warmest, and sunniest part of Europe, the small island of Cyprus. I have lived with lupus for the last 21 years, most of my life, if you count that I am 37 years old. I have also made a dream come true and I want to share it with you. My dream was to run a 5km race wearing the jersey of the Cyprus League of People with Rheumatism (CYPLER) and to run for all people with rheumatic, musculoskeletal diseases. I also want to share with you my experience and my thoughts during the race. With faith in myself, with the support of the wider association (CYPLER) as well as the members of the lupus group I made my dream come true. My biggest “problem” all these years was my lack of self-confidence, as I was very late to join our association because of my beliefs. I will not forget my first acquaintance with the lupus group in the furniture restoration workshop; how much strength and confidence I gained from this workshop. Doing things outside the norm gave me pleasure and strength!

 

Running towards the dream

 

There I was walking in the park one day, watching others running. The thought came to me that with the right guidance I could do what I have been dreaming of for years, namely, to run long distance. To run a race, say 5km.

 

 

During the duration of the race, because it took place at10.45 am the heat and the sun were too much, it “stole” my energy and made the whole run hopelessly endless. When I came upon the first “refuelling station” that had water, I took a small sip to quench my thirst and kept the bottle for later. The heat in my body combined with the heat outside was becoming unbearable. In my mind were so many thoughts, but I was mainly thinking of the girls at the association (CYPLER), the people with lupus who cheered me on in this effort shouting “Melina go, go, go Melina go goooooo”. I shouted it too with so much intensity that I even encouraged my fellow runners and I also kept running.

 

Lupus patient running in the 5km Run Limassol 2024 race, waving and smilingI then realised I had passed the 2.5 km mark and that there would be another refuelling station soon! As soon as I got there, I took off my hat and doused myself with water.  I then tried to stay on the side of the running path that was in the shade.

 

When I saw the finish arch, I gathered all my strength and started to run harder! In the last few meters, I felt so exhausted. But the joy of completing the race was great! When I reached the finish line and actually realised that I finished, it struck me that, for that race, I overcame so many of the obstacles a lupus patient can have in her life: sun, heat, dust, the cold rainy days (the time of preparation), the fatigue, the mental strain of effort. I found a solution to all the problems that happened throughout the race. But the race isn’t a 5km one; this race is our whole life. The winner is not only the one who finishes first, but also the one who fights until the end with all their strength.

 

The Dream Continues

At this point I want to say that the dream continues!! I have been invited through a sports group on Facebook to another race in Crete; have signed up for the 10km and I have already started preparing! I will continue to run for all of you! Dreams are many steps taken together and they only become a reality one step at a time. Once upon a time I could not climb a single floor without stopping two or three times due to fatigue, but now I can!

 

Written by Melina Georgiou, Member of the CYPLER Lupus Group 

 

Disclaimer: The views expressed in this article belong to the author. Please note that sun exposure is generally contraindicated for individuals with lupus. For more information, read: Can I sunbathe with lupus

 

 

 

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Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #rarediseaseday!

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#lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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