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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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗

✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.

👩‍⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.

🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.

They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused

😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.

💜 A simple tool. A better consultation.

👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:

www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.

💁‍♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.

🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.

💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.

❌ But lupus is not “just joint pain”.

‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.

💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.

Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).

📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount
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☹️ Does joint pa

🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.

‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.

💁‍♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.

🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

🟣 #MakeItCount
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😱 New tool for lupus!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients and healthcare professionals structure consultations, prioritise what matters to patients, and support more focused discussions.

Because lupus is complex, and consultation time is limited.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
📥 Download for free or fill it in online: www.lupus-europe.org/lupus-consultation-cards/

🟣 #makeitcount
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