More than five million people worldwide live with lupus, a chronic autoimmune disease that remains poorly understood by much of society. In Spain, it is estimated to affect more than 100,000 people, with around 90 % of cases diagnosed in young women.
Lupus occurs when the immune system, which normally protects us against infections and other threats, becomes dysregulated and mistakenly attacks the body’s own tissues and organs. Although there are different forms of lupus, systemic lupus erythematosus (SLE) is the most common and also the most complex, as it can affect multiple organs and systems.
It is known as a disease with «many faces» because its manifestations are extraordinarily diverse. The most common symptoms include severe fatigue, joint pain and inflammation, and skin lesions. However, lupus can also affect organs such as the kidneys, heart and lungs, as well as the nervous system. The severity of symptoms can also vary enormously from one person to another, meaning that two patients rarely present with an identical clinical picture.
This considerable heterogeneity makes lupus one of the most difficult diseases to identify. Its symptoms can be confused with those of many other conditions, and diagnosis may be delayed by months or even years. However, early detection is essential to ensure that treatment can begin as soon as possible and to prevent irreversible damage to organs such as the kidneys, heart, lungs or brain. Early diagnosis is also key to reducing the risk of complications associated with the disease, as people with lupus face approximately twice the risk of suffering a heart attack or stroke as the general population.
Perhaps because it is a little-known disease with many faces, lupus remains surrounded by uncertainty and misconceptions, giving rise to numerous questions. Are people born with the disease, or can it develop at any point in life? Is it contagious? Is there a hereditary component? Why does it predominantly affect women? Do environmental factors influence the risk of developing it? What role do hormones, infections, sun exposure, stress or certain medications play? How does lupus affect the risk of developing other conditions?
Alongside questions about the origins and mechanisms of the disease are others that relate closely to patients’ everyday lives. Is it possible to have children? How does lupus affect pregnancy, and what precautions should be taken? Can it be passed on to children? How does it impact working life, personal independence and quality of life? What is the impact of living for years with an invisible, unpredictable disease for which there is no definitive cure?
Research is opening up new avenues for answering some of these questions and improving the lives of people affected by lupus. Advances in our understanding of the mechanisms underlying the disease, the introduction of biological therapies, the development of more personalised treatments and new strategies currently under investigation, such as CAR-T therapies, are transforming the way lupus is treated. But to what extent will these advances be able to change the prognosis of the disease in the coming years? Are we getting closer to achieving treatments capable of inducing lasting remission? Will there ever be a cure?
To debate these questions, we will be joined by three experts who will offer complementary perspectives from research, clinical practice and the experience of living with the disease. Together, they will help us better understand the challenges that lupus still presents and the scientific advances shaping the future of its diagnosis and treatment.
Speakers:
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Carola Vinuesa, principal group leader of the Autoimmunity Group and associate research director at the Francis Crick Institute (FCI), and professor of Immunology at University College London (UCL).
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Cristina Solé, principal investigator in the Rheumatology team at the Systemic Lupus Erythematosus Unit at the Vall d’Hebron Research Institute (VHIR).
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Laura Belver, group leader of the Leukaemia and Immuno-Oncology Group at the Josep Carreras Leukaemia Research Institute (IJC), and a lupus patient.
Moderator:
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Cristina Sáez, science and health journalist.
The debate is being held as an associated activity of the international conference Persistent Antibody Responses in Health and Disease, led by the CNIC in collaboration with the CBM and the Medical University of Vienna, and forming part of the ”la Caixa” Foundation’s Breakthrough Conferences on Biomedicine and Health, an initiative that brings together internationally renowned researchers to foster knowledge exchange and accelerate advances in biomedicine and health.
