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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3 days ago

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a person's wider context, including these non-clinical factors.

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

www.youtube.com/watch?v=RT2Qtllx2-s
... See MoreSee Less

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a persons wider context, including these non-clinical factors. 

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

https://www.youtube.com/watch?v=RT2Qtllx2-s

13 CommentsComment on Facebook

Daniel Guimarães de Oliveira - Imunologia Clínica

That's true! Many people with problems are compelled to stop their cures because they do not have the money

I was never a person who believe in herbs as a means of treatment, now I know better, herbs has more efficiency than any pharmaceutical medicine. I suffered from FND with no results from pharmaceutical medicines, but after using herbal medicine from Dr Ehota I got cured of my ailments. I will advice you to try herbal medicine as well Contact Dr Ehota Dr Ehota

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4 days ago

‼️Today is #worldsjogrensday, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.
... See MoreSee Less

‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögrens is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.

5 CommentsComment on Facebook

I know

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1 week ago

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches.

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik
... See MoreSee Less

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches. 

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

https://youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik

4 CommentsComment on Facebook

Wow, it would certainly make an enormous difference in our lives!!! Iron deficiency can be difficult to overcome because of stomach problems but it would certainly be worth trying to get rid of this perennial fatigue.

Natural🌿remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from a deadly disease and neuropathy by Herbalist His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 Dr Osabor herbal home

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2 weeks ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
... See MoreSee Less

👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment