Transforming Patient Education for Rare Neurological Conditions

Overview

I developed a series of patient education and communication tools—including animations and physical 3D printed models—designed to help individuals understand rare pelvic neurological conditions and the surgical options available to them.

These conditions are frequently misdiagnosed, often for decades, leaving patients frustrated, stigmatized, and without effective treatment. Female patients, in particular, were disproportionately told that their symptoms were “all in their head,” compounding the trauma of delayed diagnosis.

Goals

The tools were designed to:

• Validate patients’ experiences, showing them that their symptoms had a real, physiological cause.
• Explain complex surgical procedures in clear, visual ways that were accessible to non-specialists.
• Build trust and hope, demonstrating how surgery could succeed where prior treatments had failed.
• Engage families and partners, helping loved ones understand the condition and support the patient through surgery and recovery.

Impact

The results were remarkable:

• Patients reported a renewed sense of confidence and agency, finally seeing their condition recognized and explained.
• Family members became active allies, reinforcing patient commitment and providing essential support.
• Most strikingly, among patients who engaged with the educational tools, post-surgical narcotic use dropped by around 50%, reflecting both improved recovery and reduced psychological distress.

Significance

This project demonstrated the power of targeted patient education—not only to improve understanding, but also to transform medical outcomes. By combining empathetic communication with evidence-based design, the tools bridged gaps between patients, families, and clinicians, ultimately improving both quality of care and quality of life.

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