My first year with Lupus Europe
 
Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee:  
 
After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the EULAR PARE Youth conference: Amazing, so big, so glamorous and yet so relaxed and such a friendly environment. It was really the best conference to start with! I learned so much from other patients living with Rheumatic diseases in Europe and the workshops there were so inspiring and engaging. I made some new friends and got thrown straight into networking and learn how to do that in the best way. After the PARE Youth conference I felt like I had gotten some “meat on my bones” and felt ready for my next challenge, which was a Lupus Think Tank in Washington D.C. It was a very intense meeting: just one day where me from Lupus Europe, LFA, Lupus Research Alliance, Lupus and Allied Diseases Association together with a pharmaceutical company and ACR brainstormed to bring different ways of approaching awareness about Lupus and what to focus on regarding treatment for patients.
 
I then joined the Lupus Academy, a program for Rheumatologist specialized in Lupus where they can ask questions, present difficult cases and get advice from experienced professors. It was very interesting to hear the doctors’ point of view, and feel how much they care about their patients and very humbling to hear their worries when major flares happen and everything is on their shoulders to try to save their patient. If you think that the doctors don’t care about you and only want to keep you on medications and move to the next appointment without even listening, I can tell you that that is not the case!
 
My next stop was at the EULAR course for young rheumatologists. This was my first official presentation for LUPUS EROPE in front of educated doctors. I was so nervous… But it went really well. I presented our patient panel outcomes, how patients with Lupus live with the disease in Europe. It was a really fun group of young doctors, I made some new friends and I hope to go back next time.

After that experience, I got selected to take part in the ReConnet steering committee. reConnet is a network for collaboration between scientists, doctors and health care professionals working on connective tissue diseases,  to unify how to diagnose and treat those diseases, and to bring the same standards of care regardless of what country in Europe you are in. It is part of the European Network project (ERN), a a five-year project funded by the European Commission.
 
My last big event before vacation was the annual EULAR congress. It was big, flashy, extravagant and way way way too much lecture to go to, meetings to attend and networking to do. While the lectures I attended were very interesting, the networking was even better. Everyone and anyone who has anything related to rheumatic diseases were at the congress, the best place for networking and spreading the awareness about Lupus.
 
After EULAR, it was time for some vacation: Travelling is more exhausting than you would think! And being a trustee also involved board meetings, a round table with pharmaceuticals, medical doctors and other patient organizations,… The journey has really been an intensive crash course (that lasted a bit longer than just a crash course) in how everything works. So with that, I was well equipped to contribute to designing our next 5 years strategic plan.
 
I am very excited to be a part of Lupus Europe during this time when we are shaping how the next 5 years are going to be like! If you want to make a difference and really feel the difference you can make in this world, if you are interested in making a difference for people living with Lupus, take up some of these volunteering positions, apply to our board or to be one of our co-opts to leave your mark in this world, knowing that you’re making a difference. I promise, you will Not regret it!

EULAR is ‘the’ place to be for latest scientific information on lupus and other Rheumatic diseases. As is the case every year, many of LUPUS EUROPE’s members, and some of our trustees attended the event, to raise the patient voice, hear about the latest developments, attend the PARE meeting, and network with scientists, researchers and other patient organisation delegates.

Here are few take-aways that LUPUS patient attendees reported:

• While pregnancy is still a challenge, it is in most cases no longer a problem. Even knowledge about the use of biological drugs during pregnancy is improving, opening up new treatment options during this period in the future.
• Family planning counselling, from diagnosis and ongoing by both rheumatologists and gynecologists has proven very important in improving the outcome in pregnancy.
• While the importance of psychological support for Lupus patients is recognised, resources are lacking. An open question is who should take care of this aspect.  Fatigue, pain, negative thoughts and guilt are the main challenges to deal with. Keeping a diary was mentioned as improving the managing of the day and the doctor-patient relationship.
• The higher risk of Cardio-Vascular diseases in SLE has been demonstrated, highlighting that ASA and HCQ>600mg (and statins when LDL > 100) can help in reducing the risks.
• Belimumab has been used for more than 10 years with positive results.
• Patients can participate in all the phases of a project from conception to realization and dissemination. An example of a self-assessment site for Sclerodermia in the USA was presented where Patient Research Partners participated in all the phases.
• The importance of patient reported outcome in evaluating the status of SLE and disease activity continues to be debated: Several presentations highlighted its importance but some contrary voices were also heard during the conference.
• Several presenters, including Martin Aringer, one of our lead 2016 Convention speakers highlighted the challenges of existing criterion for Remission definition in SLE, Sjögrens and APS. Defining technical measurement remains an important debate.
• Matthias Schneider and other presenters raised the questions of which target/outcome is more relevant in the management of SLE. This is an important debate in which patient organisations will need to continue raising their voice.
• Dr Christodoulou presented on the positive impacts of positive thinking and mindfulness on chronic illness.
• Plaquenil is once again shown to protect patients from mortality and other diseases… Adhere to your treatment.
• Inflammation seems to change throughout the day: Tissue damage is the highest in the morning and reduces through the afternoon but then goes up again in the evening, to peak again early in the morning.
• Hydroxycloroquin reduces mortality by 45% (adhere to treatment!). The SLE subgroups with the highest mortality risk are patients with Dementia, Epilepsy, Renal failure, Diabetes and Malignancies.

 Obviously, this is only a very brief overview for each of the above items. They are like newspapers headlines, lacking in nuance, but the good news is that you can access ALL ABSTRACTS from EULAR at the following link: http://congress.eular.org/myUploadData/files/2017_ARD_full_abstracts.pdf