In this powerful and deeply personal episode of Clearly KC, Dr. Melissa Barnett speaks with Deidra Bonner, PhD candidate, registered nurse, and keratoconus patient, about the lived experience of KC and the broader dimensions of quality of life that often go unrecognized in clinical care. Deidra shares her journey following her diagnosis in 2011, describing a prolonged and challenging path. For several years, she navigated daily life with significantly reduced vision—an experience that impacted not only her professional responsibilities as a nurse but also her ability to engage fully in everyday moments, including recognizing the faces of those closest to her. 

A turning point came years later when she was successfully fit with scleral lenses. The restoration of visual clarity was immediate and emotional, offering a sense of hope she had not experienced since her diagnosis. At the same time, she candidly reflects on the ongoing complexities of lens wear, reinforcing that even effective treatments do not fully resolve the broader burden of disease. 

This lived experience became the foundation for Deidra’s doctoral research, which focuses on quality of life in keratoconus. She emphasizes that quality of life is not defined solely by visual acuity, but rather by a complex interplay of physical, emotional, social, and functional factors. Patients may achieve strong visual outcomes in the clinic, yet still struggle outside of it—highlighting the need for clinicians to consider the full context of a patient’s life when evaluating treatment success. 

Drawing on her nursing background, Deidra introduces a holistic framework for understanding patient experience. This broader perspective challenges clinicians to move beyond a purely clinical lens and consider how keratoconus shapes the patient’s overall lived experience. 

A particularly unique aspect of this episode is Deidra’s focus on preparedness and “disaster readiness” for individuals with keratoconus. She shares personal experiences—including a prolonged episode with a stuck scleral lens—as well as insights shaped by living in a region affected by the California wildfires. She discusses the challenges patients may face during emergencies, such as needing specialized supplies for lens care to managingvision limitations during evacuations or hospital visits.  

Throughout the episode, a central theme emerges: keratoconus care must extend beyond the exam room. By listening to patient experiences, improving communication, and addressing the broader realities of living with KC, clinicians can deliver care that is not only effective, but truly patient-centered.