Here we share with you some patients’ perspectives about Sjögren’s and dry eye where they explain how it is a challenge for them and how it impacts their life.
Sjögren’s is often characterized by dry eyes (xerophtalmia) and dry mouth (xerostomia). Dry eyes and dry mouth are disabling symptoms that have a strong impact on the quality of life. However, Sjögren’s is so much more than dry eyes and dry mouth: it can affect the whole body.
Sjögren’s is a rheumatic, autoimmune and systemic disease with diverse clinical expression, prognosis and a multidimensional complexity. Diagnosing, treating, following up and researching Sjögren’s remains a significant challenge which is equalled by the lack of acknowledgment and recognition that it is a devastating disease, affecting patients physically, mentally, emotionally, socially, and financially. Quality of life is dramatically impaired. It is difficult and frequently impossible for others to understand how patients feel, how they must lead their lives with a disease lacking effective and specific treatment that has them living daily with invisibility, unpredictability, and unimaginable suffering.
For World Sjögren’s Day 2022 on July 23 and Dry Eye Month we decided to focus on a traditional manfestation of Sjögren’s: dry eye. This frequent, significant and debilitating symptom remains too often underdiagnosed and undertreated. Like all other symptoms of Sjögren’s, it deserves more and better attention and solutions. Many patients in Europe still miss some basic quality information about one of the most common manifestations of this disease and feel misunderstood about it. As a young organisation, we chose to start with the beginning before digging deeper in the complexity and heterogeneity of Sjögren’s.
