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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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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