The stargardt disease experience: An analysis of expressive writing essays about living with a rare eye disease

Individuals with Stargardt disease, a rare eye disease, experience unique challenges with daily life. However, literature on psychological effects, potential areas of intervention, and gaps of care are sparse. This study explored these domains with a novel approach. Using grounded theory, we analyzed the expressive writing essays of 22 participants with Stargardt disease. Participants revealed frustration with the diagnosis process, loss of independence, social embarrassment, feeling misunderstood, and impact on their personal and professional lives. Positive experiences included effective coping strategies and social support networks. This study provides insight into the benefits of analyzing essays produced in expressive writing interventions among understudied populations. Results suggest communication between practitioners, patients, and their family is important especially during diagnosis. Future research and care providers could incorporate these findings in developing interventions to build patients’ support systems and educate patient and families about the unique challenges of this rare disease.