UNMASKING LUPUS AWARENESS CAMPAIGN

In order to address the challenge of low awareness of lupus and support patients and the lupus community, LUPUS EUROPE and their membership organisations, started to implement a disease awareness campaign that would help foster understanding of the experiences of people with lupus.
The ‘Unmasking Lupus’ campaign, coordinated under the umbrella of LUPUS EUROPE consisted of an art competition in which submissions could be anything creative such as drawings, paintings, poems, photos, and are requested from patients, carers, families and friends, illustrating their experiences of lupus and what it means to them.Objectives of Campaign 

  • Raise awareness of lupus and its impact on people living with lupus
  • Help to de-stigmatise lupus and enhance empathy for people living with the disease
  • Strengthen the lupus community by showing those living with lupus that they are not alone and others know how they feel
  • Identify lupus ‘patient ambassadors’; lupus patients that can articulate their story to the media
  • Generate educational materials

Process:

The contest was launched at Cyprus Convention in November 2012. the competition information, guidelines, logo, microsite and articles for national newsletters/media were prepared. 8 countries participated, with their own national competition, some of which gathered 40+ participants. National winning submission were then entered into Unmasking Lupus Europe Contest

We have received absolutely outstanding submissions from all over Europe, and been really moved by some of the testimonies. in September 2013, the Judging Panel, composed of Prof Dimitrios Boumpas, Dr Marta Mosca, Prof Dr Matthias Schneider and Isabel de Ron, selected the winning entry.

It was no easy task to select the winner, as the quality of the submissions was really great. While we could, obviously, only select one European Winner, national winners have all reasons to be proud of their achievements. Well done! We will want to make sure that none of the work submitted by participants and by the organisers of the competition is lost. LUPUS EUROPE’s Board of Trustees is considering multiple options on how we can provide further exposure of this work within the lupus patient community and beyond. The testimonies and expression of what Unmasking Lupus really means to patients is worth it! 

The outcome:

On Thursday November 28, Stefania Viscillo was acclaimed as European Winner of the Unmasking Lupus Art Competition for her work “a Second Chance”.

Here is how Stefania describes her story displayed in the Acrylic and Glass realisation:

“Initially I was living in complete darkness because of a lack of diagnosis: for 6 years I have been looking for someone to tell me what I had. Thanks to Dr Afeltra, I finally understood what I had to live with. I started to live day by day, with highs and lows, always weak, no stamina, aching and often in pain, and two children I wanted to see grown up. I thank my husband for his devoted support and the psychologist who helped me.

I resumed my art studies to make art not just a way to express myself, but a way to help myself. I attended an Art Counseling Master, and made my dream come true: to use the art language to visually express feelings, emotions, understanding them, identify the behavior dynamics and give them a name in order to deal with them and change them.

These studies allowed me to unmask and finally see my face, my potential and the real ME. I learned to listen to my body, disclose its messages and, above all, follow it. I understood that, even though my life was no longer to be the same, I was given a second chance, a chance to walk other paths. Better paths? I don’t know, but I had the courage to make choices that I would never have made if I weren’t suffering from lupus.

I’ve got a better balance in my life, I feel more content. The symptoms are now regressing and, after so many years, it’s almost hard to believe! “

Congratulations Stefania! And together with you, we want to also congratulate the national winners and the so many participants all over Europe. This is great work you have done, testimonies over the many facets of lupus in our lives.

In Closing, we would like to extend a very big thank you to Yvonne and Peter Norton, who have lead this Unmasking Lupus project over the past years. The unmasking lupus contest is one more success that comes to their credit! Well done and thank you Yvonne and Peter!

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11 hours ago
LUPUS EUROPE

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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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12 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
20 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

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Not succeeding to send an email for registration. I would like to participate. Thanks

Bonjour, en quelle langue sera la webinaire s'il vous plaît

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1 day ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
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Grazie

💜💜💜