This project shares insights on the evolving mental health challenges faced by individuals with lysosomal storage conditions through surveys conducted by the LSD Collaborative in the UK.
Lysosomal storage diseases (LSDs) present unique challenges, not only due to their physical symptoms but also because of their significant impact on mental health both on the patients and their families. From 2020 to 2024 the LSD Collaborative has been capturing mental health and wellbeing data of our communities through our community surveys.
The findings from the surveys not only highlight the critical mental health concerns, such as anxiety, loneliness, and depression but the need for continuous advocacy and improved mental health resources. In 2024, exhaustion and stress are explicitly mentioned, indicating a shift toward emotional and physical fatigue after enduring ongoing struggles over the previous years.
