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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1 hour ago

🔔 𝗗𝗼𝗻❜𝘁 𝗺𝗶𝘀𝘀 𝗼𝘂𝘁❗

Explore the significant takeaways from #eular2024 by joining us in this fantastic webinar!

🗓️ Date: July 11th
⏰ Time: 19h CET (i.e. Paris time)
✍️ Register now by emailing secretariat@lupus-europe.org
... See MoreSee Less

🔔 𝗗𝗼𝗻❜𝘁 𝗺𝗶𝘀𝘀 𝗼𝘂𝘁❗ 

Explore the significant takeaways from #EULAR2024 by joining us in this fantastic webinar!

🗓️ Date: July 11th
⏰ Time: 19h CET (i.e. Paris time)
✍️ Register now by emailing secretariat@lupus-europe.org
1 week ago

As we announced last week, Lupus Europe's presence has been robust with six abstracts, six oral presentations, and two in the scientific program.

A total of 16 attendees from our organisation, including Board Members and PAN members, actively participated in the Congress. That means people living with lupus were present in the most important sessions related to lupus.

It has been four days of intensive learning, collaboration, and advocacy. With so much valuable information and so many experiences to share, we will break down some of our insights and learnings in a series of posts.

🌟 First-day highlights from #eular2024!

🎤 𝐎𝐩𝐞𝐧𝐢𝐧𝐠 𝐏𝐥𝐞𝐧𝐚𝐫𝐲 𝐛𝐲 𝐏𝐫𝐨𝐟. 𝐃𝐚𝐧𝐢𝐞𝐥 𝐀𝐥𝐞𝐭𝐚𝐡𝐚

The Congress kicked off with an opening session by EULAR President Prof. Daniel Aletaha, who highlighted the organisation's focus on patient-centeredness, innovation, and inclusivity in managing rheumatic and musculoskeletal diseases (RMDs).

Prof. Aletaha stressed the need for a more substantial integration of patient voices in policymaking and highlighted ongoing initiatives aimed at enhancing patient care across Europe, like the EULAR Manifesto, which was presented at the ceremony.

The open ceremony closed with the award ceremony, recognising outstanding contributions in the field of Rheumatology.

🔬 𝐒𝐜𝐢𝐞𝐧𝐭𝐢𝐟𝐢𝐜 𝐡𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬

1.⁠ ⁠C̲A̲R̲ T̲-̲C̲e̲l̲l̲ t̲o̲ t̲r̲e̲a̲t̲ R̲M̲D̲s̲ b̲y̲ P̲r̲o̲f̲.̲ D̲r̲.̲ G̲e̲o̲r̲g̲ S̲c̲h̲e̲t̲t̲

Prof. Schett discussed the potential of CAR T-cell therapies in rheumatology. The session covered the principles of CAR T-cell application and its potentially promising future in treating autoimmune diseases like lupus.

2.⁠ ⁠L̲u̲p̲u̲s̲:̲ W̲h̲a̲t̲'̲s̲ o̲n̲ t̲h̲e̲ h̲o̲r̲i̲z̲o̲n̲?̲

Prof. Dr. Laurent Arnaud masterfully presented an extensive talk on the current and future landscape of lupus management, providing insights from historical perspectives to current treatment strategies and emerging technologies.

He also unveiled one of our newest projects: LupusGPT. LupusGPT is an artificial intelligence tool developed by Lupus Europe, designed to understand and answer patients' questions about lupus in a robust, validated manner using only high-quality, reliable information.

LupusGPT is currently in beta version and will be fully available soon, providing a reliable source of information for lupus patients. In the meantime, you can try it in test version:

www.lupusgpt.org

Suggestions are welcome at secretariat@lupus-europe.org!

🔗 Stay tuned for more updates as we continue to share our experiences and learnings from #eular2024!
... See MoreSee Less

As we announced last week, Lupus Europes presence has been robust with six abstracts, six oral presentations, and two in the scientific program.  

A total of 16 attendees from our organisation, including Board Members and PAN members, actively participated in the Congress. That means people living with lupus were present in the most important sessions related to lupus. 

It has been four days of intensive learning, collaboration, and advocacy. With so much valuable information and so many experiences to share, we will break down some of our insights and learnings in a series of posts.

🌟 First-day highlights from #EULAR2024!

🎤 𝐎𝐩𝐞𝐧𝐢𝐧𝐠 𝐏𝐥𝐞𝐧𝐚𝐫𝐲 𝐛𝐲 𝐏𝐫𝐨𝐟. 𝐃𝐚𝐧𝐢𝐞𝐥 𝐀𝐥𝐞𝐭𝐚𝐡𝐚

The Congress kicked off with an opening session by EULAR President Prof. Daniel Aletaha, who highlighted the organisations focus on patient-centeredness, innovation, and inclusivity in managing rheumatic and musculoskeletal diseases (RMDs). 

Prof. Aletaha stressed the need for a more substantial integration of patient voices in policymaking and highlighted ongoing initiatives aimed at enhancing patient care across Europe, like the EULAR Manifesto, which was presented at the ceremony.

The open ceremony closed with the award ceremony, recognising outstanding contributions in the field of Rheumatology.

🔬 𝐒𝐜𝐢𝐞𝐧𝐭𝐢𝐟𝐢𝐜 𝐡𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬

1.⁠ ⁠C̲A̲R̲ T̲-̲C̲e̲l̲l̲ t̲o̲ t̲r̲e̲a̲t̲ R̲M̲D̲s̲ b̲y̲ P̲r̲o̲f̲.̲ D̲r̲.̲ G̲e̲o̲r̲g̲ S̲c̲h̲e̲t̲t̲ 

Prof. Schett discussed the potential of CAR T-cell therapies in rheumatology. The session covered the principles of CAR T-cell application and its potentially promising future in treating autoimmune diseases like lupus.

2.⁠ ⁠L̲u̲p̲u̲s̲:̲ W̲h̲a̲t̲̲s̲ o̲n̲ t̲h̲e̲ h̲o̲r̲i̲z̲o̲n̲?̲ 

Prof. Dr. Laurent Arnaud masterfully presented an extensive talk on the current and future landscape of lupus management, providing insights from historical perspectives to current treatment strategies and emerging technologies.

He also unveiled one of our newest projects: LupusGPT. LupusGPT is an artificial intelligence tool developed by Lupus Europe, designed to understand and answer patients questions about lupus in a robust, validated manner using only high-quality, reliable information. 

LupusGPT is currently in beta version and will be fully available soon, providing a reliable source of information for lupus patients. In the meantime, you can try it in test version:

www.lupusgpt.org

Suggestions are welcome at secretariat@lupus-europe.org!

🔗 Stay tuned for more updates as we continue to share our experiences and learnings from #EULAR2024!Image attachmentImage attachment+7Image attachment
2 weeks ago

📣 ERN RECONNET is glad to share the recent article published on The Lancet that saw our ePAG representative for Systemic Lupus Erythematous (SLE), 🦋 Jeanette Andersen, co-author of relevant discussion on pregnancy and rheumatology.
💪 Jeanette is highly involved in several Network initiatives, she is one of our Steering Committee Member, an ePAG representative at our Research and Quality of Life Working Group, and an ePGA representative for lupus in our SLE Disease Group, moreover, she is the Chair of LUPUS EUROPE.

⭐ This important article saw as authors also other ERN ReCONNET experts as Prof. Avcin and Prof. Tincani.

🥰 We are very proud of you, Jeanette! 👏 Congrats from all of us for such important achievement!

📰 News: shorturl.at/mDkS7
⚙️ Resources on ERN ReCONNET SLE: reconnet.ern-net.eu/disease-sle/
🤰Details on the ERN ReCONNET resources on pregnancy and rheumatology: bit.ly/3zfnOu7
🇮 Info on ERN ReCONNET Research and Quality of Life Working Group:
reconnet.ern-net.eu/wg-research-and-quality-of-care/

#ERNReCONNET #ERNs #rheumatology #science #knowledge #experts #rarediseasecommunity #socialmedia #ERNReCONNETePAGs #pregnacy #SystemicLupusErythematous #europeanreferencenetwork #ERNReCONNETSLE #europeanreferencenetworks #patient #awareness #rheum #lupus #healthcare #lupusawareness #research #ePAG #TheLancet #scientificarticle
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2 weeks ago

🌟 We're excited to invite you to a special webinar where we will dive into the key highlights from the European Congress on Rheumatology #eular2024, which took place last 12-15th June in Vienna!

🗓️ Date: July 11th
⏰ Time: 19:00 CET (i. e. Paris time)
✍️ Register now by sending an e-mail to secretariat@lupus-europe.org
... See MoreSee Less

🌟 Were excited to invite you to a special webinar where we will dive into the key highlights from the European Congress on Rheumatology #EULAR2024, which took place last 12-15th June in Vienna!

🗓️ Date: July 11th
⏰ Time: 19:00 CET (i. e. Paris time)
✍️ Register now by sending an e-mail to secretariat@lupus-europe.org
LUPUS EUROPE Uniting people with Lupus throughout Europe
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