European federation Sjögren Europe’s board members emphasise the vital need for more research into this underrepresented and often “invisible” condition
We need more visibility, attention, and solutions for Sjögren’s. This complex, multifaceted condition dramatically impairs quality of life. Symptoms are debilitating and unpredictable, leading to unimaginable suffering. The burden of Sjögren’s is wide and real although invisible. The lack of acknowledgement and recognition that it is a devastating systemic disease, affecting patients physically, mentally, emotionally, socially, and financially explains why patients feel misunderstood, isolated and left to their own devices. This is compounded by the fact that less research, interest, time and effort has been devoted to Sjögren’s when compared with other similar conditions despite its considerable prevalence among connective tissue diseases. The heterogeneous and complex nature of the disease results in unsatisfactory levels of knowledge and comprehension and leads to the staggering challenge of diagnosis, treatment, follow- up, and research. The lack of effective and specific treatment, support and understanding is reflected in the numerous patients’ unmet needs. Misunderstandings, misdiagnosis, and delays in diagnosis and access to treatment and care are a situation that is changing only very slowly.
In this context, patients across Europe decided to unite to have a stronger voice and to contribute to the advancement of knowledge, treatment and care of Sjögren’s by promoting partnership and patient involvement in the definition of unmet needs and areas of future research. Lived and experiential knowledge is complementary to evidence-based knowledge and has the potential to make a significant difference. Sjögren Europe was therefore created in 2019. It is a federation of national associations representing Sjögren’s patients. Its purpose is to
increase knowledge and awareness about Sjögren’s and work to improve health and care throughout Europe for patients suffering with this chameleon disease. To achieve optimal care, we work with national Sjögren’s organisations, patients and carers, health professionals, academia, pharmaceutical companies, and government. Supporting and disseminating research is vital and integral to our approach. Members are encouraged to support and participate in research. Individual Board members participate either via a main study committee, as patient group partners or as individual patients. In addition to local projects, they are involved in Europe-wide projects and are actively engaged with EULAR, the European Alliance of Associations for Rheumatology. We want to have a say in everything that affects us.
Raising awareness and developing information for patients are also core and primary activities on which Sjögren Europe is equally focused. By increasing both public and professional awareness, the goals are:
- To reduce the time to diagnosis.
- To promote research for better treatments or a cure.
- To foster the advancing of an improved healthcare pathway.
- The implementation of psychosocial support and adapted self-management programs.
It is also about sharing the experiences, difficulties, hopes and means of resilience put in place by patients. Ensuring that they are heard and considered validates what they endure by recognising the hardships and the impact of Sjögren’s in their lives and it also highlights the obstacles they have overcome and the resources they discovered during this journey. We want patients to feel encouraged to take an active role in their care for better outcomes and underline the importance of good communication between doctors and patients, a point as obvious as it is little invested.
Different types of information material in a variety of formats have been created to enrich the supply of quality information. Leaflets, webinars, a self-help booklet, videos, and presentations, created by patients and/or health professionals have been developed thanks to the initiative of Sjögren Europe. Sjögren’s Awareness Month and World Sjögren’s Day are privileged opportunities to raise awareness on specific aspects of the disease like the invisibility of the condition or the fatigue patients experience. On this last topic, Sjögren Europe carried out a successful and high-profile campaign, simple and accessible, focusing on the patient perspective about fatigue to which was added the rheumatological perspective with a webinar and the psychological perspective with a self-help booklet with tips for targeting fatigue.
“This disease invades all aspects of our lives and learning to live with it is a long road.”
Whatever the project, it is crucial for us to emphasise the systemic aspect of our disease: traditionally characterised by a gradual disappearance of tears and saliva, Sjögren’s is so much more than dry eyes and dry mouth. It is different kinds of pain, extensive fatigue and organ involvement and dysfunction. It can potentially affect the whole body and patients have a higher risk of developing lymphoma. This disease invades all aspects of our lives and learning to live with it is a long road. Having understanding, empathetic, human, and supportive companions at one’s side, be they patients, clinicians, researchers or others, is a blessing as well as a prerequisite for managing to live with Sjögren’s and transforming how you live with this disease, creating positive synergies and thus generating effective changes in the patients’ lives.
Additional Contributors: L. Stone, A. Vieira, C. Bouillot, J. Koelewijn-Tukker, M. Oosterbaan, K. Antonopoulou