In this episode of Eyespiring, Heather Patrick sits down with Leslie Nwankwo, a registered nurse, health educator, and passionate patient advocate living with retinitis pigmentosa (RP). Leslie shares her personal journey navigating life with progressive vision loss, the challenges she faced along the way, and how she discovered her voice as an advocate for herself and the blind and visually impaired community.

Leslie opens up about the emotional side of vision loss, the isolation, fear, and frustration, and how embracing tools, community, and self-acceptance helped her thrive personally and professionally. She also explains the profound role of advocacy in shaping care, from joining Prevent Blindness Texas’ ASPECTS Patient Engagement Program to speaking at FDA meetings and advocating on Capitol Hill.

This conversation highlights the importance of sharing your story, staying engaged, and using your voice to create change in the vision loss community. Leslie’s experiences are both inspiring and practical, offering insights for anyone navigating life with a disability or looking to make an impact through advocacy.

Key Takeaways

· Vision loss affects every aspect of life, but resilience and adaptation make it possible to stay engaged and “in the game.”

· Community support and self-advocacy are crucial for overcoming isolation and achieving personal and professional goals.

· Sharing your story is a powerful tool, it raises awareness, influences decision-makers, and connects you to advocacy opportunities.

· Patient advocacy can take many forms, from individual conversations with healthcare providers to participating in national forums and policy discussions.

· Tools, technology, and resources are vital in maintaining independence and enabling success with vision impairment.

Leslie’s story reminds us that even in the face of vision loss, using your voice, building community, and staying engaged can create real change.

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