Navigating Health When Sudden Blindness Occurs: The Experience of Leber Hereditary Optic Neuropathy

Abstract

Millions of Americans are affected by vision loss. Individuals diagnosed with Leber hereditary optic neuropathy face unique challenges due to the sudden and severe nature of vision loss. This genetic condition often results in difficulty obtaining a timely diagnosis and adjusting to blindness in a society primarily designed for sighted individuals. This study aimed to better understand the experiences of individuals who have severe central vision loss, particularly their interactions with the health-care system. Using a qualitative descriptive approach, we conducted interviews and focus groups with 27 severely visually impaired participants to explore shared themes in their narratives. Findings revealed that vision loss profoundly altered participants’ lives; many experienced extended periods of psychological, emotional, and physical distress. Most reported inadequate guidance, diagnosis, and/or care coordination in the immediate aftermath of vision loss. Mental health impacts were significant, yet accessing mental health support was difficult. Participants emphasized the need for more inclusive, holistic health-care support. Recommendations from this study include the integration of the nurse case manager role into ophthalmology clinics to provide early intervention and emotional support, enhance the quality of life for individuals facing sudden vision loss, and promote more accessible and empathetic health care.