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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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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