Much remains to be discovered about Lupus. Not just disease mechanisms and new treatments, but also a better understanding of what it means to live with lupus, the day to day issues faced by patients and their relatives, the impact on social and psychological functioning, … To help people living with lupus bring their life experience to the table, LUPUS EUROPE created Patient panels, by and For people with lupus. The panels bring together 10-15 persons living with lupus from all over Europe to discuss topics of interest. the discussions are animated by People living with lupus themselves, creating a unique atmosphere in the group, and allowing to speak in full confidence, without the fear of the “white blouse”, or the impression that “there must be a correct answer”. Participants can simply be themselves and speak their voice…

3 main patient panels have taken place so far:

Patient panel I on treatment

In  November 2014, 10 Lupus affected persons from 7 countries shared their experience about “treatment”, with the view to help improve the quality of life of people living with lupus. The Panel Brought new understanding of treatment, which participants defined as “any product or activity that aims at improving the person with lupus’ quality of life” and resulted in the issuance of 3 letters addressed respectively to People living with lupus, patients organizations, and the medical community, addressing how they each can help in this area. A full report of  this panel can be found here.

Patient panel II on the burden of living with lupus

In March  2016 , a new panel aimed at further exploring the burden of living with lupus, and to dive into the burden of treatment day after day. One of its objective was to understand the journey with the disease, how the Patient Engagement model used in Health psychology applies to people living with lupus, and the consequences for Patient organisations. The model was validated and its implications for patient organisations, and how they need to address differently patients based on where they are in their journey with lupus are significant. A complete report on this patient panel can be found here.

This panel also resulted in a publication by D. Mazzoni in the magazine Muskulo-skeletal care, which you can download here .

A specific session was dedicated to Clinical trials, seeking to understand what would cause patients to join or not a Clinical trial, and too stay committed till the end.

 

Patient panel III on Youth

In May 2018, our 3rd patient panel was organised on the theme of youth. 10 Lupus affected young people, aged 18 to 26, from all over Europe shared their experience of living with lupus. The agenda was focused on the topics of interest and issues they identified themselves ahead of the Friday to Sunday gathering.  While they considered taking pills every day as a key problem, they preferred to focus on the collective issues of being understood by friends and family and having to live with limitations. A big “Wow” was the feeling of guilt expressed by several female participants (guilt of imposing limits to their partners, guilt of not being able to do as much as others, …). This guilt seems to be a very important underlying dimension of their social and affective life, which is likely much misunderstood by doctors and patient organizations. Young people with lupus remain fundamentally more positive on their life with lupus than the average patients. Their messages to other young people with lupus are reassurance, and positivism, and while they perceive lupus as being “all over their lives”, they want to make sure they are not ruled by it, and want to have no obligations relating to it… On the medical front, when we probed what would drive them to consider joining a clinical trial, clear first media is their lupus doctor, second are national lupus groups and LUPUS EUROPE. A full report of this panel can be downloaded here.

 

LUPUS EUROPE intends to continue running patient panels, so stay tuned on this page, where more information will be available as we progress 🙂

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2 days ago

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.

🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.

🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.

🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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2 days ago

‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLEs most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
2 days ago

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! lupusgpt.org/

#WorldLupusDay
#Lupus100
... See MoreSee Less

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: https://lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

https://lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! https://lupusgpt.org/

#WorldLupusDay
#Lupus100
2 days ago

🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #lupusgpt and find out!

Getting to know the disease is key for an early diagnosis.

lupus100.org/en/questions/what-are-the-first-signs-of-lupus

lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible
... See MoreSee Less

🚨 #Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #LupusGPT and find out!

Getting to know the disease is key for an early diagnosis.

https://lupus100.org/en/questions/what-are-the-first-signs-of-lupus

https://lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible