From the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee may seem daunting to some, so we have decided to tell our own ‘trustee stories’ to help you gain insight into the role of a trustee. Beginning with one of our newest trustees, Kirsi Myllys, our treasurer.

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“My first contact with the LUPUS EUROPE Trustees took place in Larnaca at the Convention held in Cyprus in 2012. There and then I made a promise to organise the 2014 convention in Helsinki. I knew this was a big promise to make, but it all happened and everything went well. The following year I had several skype calls with the Trustees and then in the summer of 2013, they invited me to a Trustees’ meeting in Amsterdam. That was a dream come true – truly.

In Amsterdam I felt I was one of them, one of the group. The team was so efficient, there was a lot to go through, all concerning lupus, and a couple of times I had to leave the room, when the Trustees discussed and decided on something that wasn’t meant to be heard by a non board member. In the end, I thought it seemed so great what LUPUS EUROPE is doing that I wanted to be more involved and do my bit. I have no illusions about it, I know it means hard work, but it’s all in the name of lupus.

Now that I’m one of the Trustees I get to do what I enjoy most, which is organising events and accounting (I finished my retraining in accounting in 2014). There is so much I need to learn, but one step at a time and in a while I will even be able to memorise the names of all the different organisations that Lupus Europe is involved with without any effort and notes. The best thing from my point of view is, however, that I know there is always someone there to help me out, if I feel I cannot do something. This feeling is new in my experience of voluntary work 😀

Kirsi”

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🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”

That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.

Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.

🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.

📖 Read the study:
lupus.bmj.com/content/13/2/e002148
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‼️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.
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‼️Today is #Worl

🧠 Brain fog is real.

For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.

✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.

🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.

lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
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🦋 Understanding lupus is crucial for effective management and self-management.

💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.

🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an overall knowledge score

💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.

📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.

These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.

SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.

🔗 Complete SLAKE today and let us know what you think!

lupusresearch.limequery.org/775349
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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