Monday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”.

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Message is that lupus is complex and complicated both to manage and to live with. Only one new compound in 50+ years has passed Phase III of clinical trials. Cause of disease is still unknown yet a special cocktail of genes and environmental factors can trigger onset of lupus and further direct the course of disease.

Current treatment and practice might keep us out of the hospital bed, but not out the sick bed. Our LEO study1 showed that only about half of us living with lupus maintain connection to the workforce, and the majority of those do so on reduced terms: while diagnosed at the age of 37 (25-45 yrs) and time to diagnosis is 7 years (average); This serious change of life happens at the time of establishing family and career!

There is no vaccine or golden rule of behavior that will prevent disease onset or further development. We have learned though the past few years that treatment plan is a shared decision between you and your treating specialist, so follow this plan. Also considering the typical comorbidities of autoimmune disease are complications from photosensitivity, smoking, level of exercise and dietary adjustment to observe CVDs could improve the general health status.

Current treatment recommendations are anti-malarials (hydroxychloroquine) to provide the long-term lowering general disease symptoms. When this is not enough, further immunosuppresives can be added, like from milder methotrexate to azathioprin, cyclosporine to mycophenolate mofetil. As a fast actor is generally used prednisolone. Only hydroxychloroquine and prednisolone have been approved for managing lupus respectively 1955 and 59.

There is a list of different biologics used in cases where other treatment is not enough or not having the wanted control of disease activity: rituximab, infliximab, etanercept, adalimumab and belimumab – most of which are used/approved for treatment of rheumatic arthritis. It is very difficult to tell when this or that compound has any effect on the individual, which complicates the efficacy assessment. No one set of biomarkers nor treatment  is yet found.

The failing trials of one compound after another is devastating to witness – each time one less option for perhaps better outcomes and improved quality of life.

Lupus is often viewed as the archetype of autoimmune diseases – if the understanding of why and how this disease operates, then perhaps the autoimmune enigma can be solved!

People living with lupus share some further conditions with other rheumatic and/or autoimmune diseases, like serious fatigue, comorbidities, damage accrual not only from autoimmune response but also from treatment and more. Our special lupus aspect is complexity, the early age, the very burden and the mental impact. We need to do better!

Us living with lupus need to get actively involved in the research by not only delivering body fluids and tissue, but also through involvement in the planning and execution of research.

New approaches to find better research tools for classification of symptoms and disease manifestations clinically (ACR/EULAR) and genetically (IMI PRECISEADS), revision of the EULAR Recommendations of Management of SLE and revision of PROs used to capture disease activity – are in the process and with our representation.

Patient representatives have been actively engaged in building of consortia to launch new initiatives to build a better foundation for the lupus advancement in disease understanding, defining trial end-points and improve the patient reported outcome measures. We are part of the newly established ERN ReCONNET. At the moment we have one lupus representative working for EMA, but we also need to be better represented in other regulatory and political settings locally, regionally and nationally as well as internationally.

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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.
... See MoreSee Less

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
... See MoreSee Less

‼️ 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
LUPUS EUROPE Uniting people with Lupus throughout Europe
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