Navigating the World with Low Vision: Vanessa’s Experience with Retinitis Pigmentosa

In recognition of Low Vision Awareness Month, we are sharing a heartfelt and candid testimonial from Vanessa, a valued member of the Envision team. This special month serves as a poignant reminder of the importance of understanding, acknowledging, and discussing the challenges and triumphs faced by individuals living with low vision. Her experiences resonate with the collective effort needed to create a more inclusive world for everyone.

Vanessa's journey into understanding her low vision condition started unexpectedly in her 30s. "I was oblivious and unaware I had any vision issues apart from being a bit short-sighted," she begins, recounting the initial discovery of her retinitis pigmentosa (RP), a condition that took her on a rollercoaster of diagnoses and emotions.

The Discovery and Diagnosis

It was the peculiar behavior of her eye pupils, expanding unusually, that propelled Vanessa into seeking medical advice. What initially was thought to be macular degeneration turned out to be RP, a genetic condition that no one else in her family seemed to share. "But to be honest, I have a really mild form, and people with retinitis pigmentosa can lose sight pretty quickly. But I think for me, it's quite slow," Vanessa explains, offering a glimpse into the unpredictability of the condition.

Adjusting to a New Perspective

Living with low vision, Vanessa emphasizes, varies greatly from person to person. For her, the progression has been gradual, affecting her ability to drive and even her confidence in riding a bicycle or going out for a run. However, she is excited about tandem biking and is running with her Running Blind buddies in Leiden. This is a testament to adaptating and celebrating newfound joys.

It is the shared moments of laughter and adjustment within her loved ones that her story resonates deeply. "In the evening, our living room gets dark and my peripheral vision isn’t so good. My husband will hold out a glass of wine to me and say ‘Glass of wine, 2 o’clock’. I've taught him to give me clock notations, just like we have on the Envision Glasses," she shares, illustrating the practical ways they've overcome these challenges together.

Assistive Technology for Empowerment

A significant part of Vanessa's journey is learning to communicate her needs and experiences with those around her. This open dialogue extends beyond her immediate circle, touching on her professional life at Envision, where she finds purpose in connecting with the blind and low vision community. "It's been brilliant for me to give me room to talk about these things and then normalize it," she says.

Vanessa also credits assistive technology, like the Envision Glasses and app, as crucial tools for independence. These technologies not only assist in daily tasks like reading smaller fonts on bills or books but also offer a sense of self-reliance.

Embarking on New Journeys

As Vanessa navigates the evolving landscape of her vision, she is contemplative about the future, especially as she begins to explore using a cane for an easier and safer commute. This step signifies more than just an aid for mobility; it's a testament to her resilience and willingness to embrace change.

Vanessa's story is a powerful reminder of the strength found in vulnerability, the importance of innovation in accessibility, and the profound impact of community support. Her experiences offer invaluable insights for anyone navigating the complexities of low vision, as well as for those working to create a more inclusive world.

For more insights and stories about living with low vision, check out this low vision guide. If you would like to share your story, please contact us at support@letsenvision.com.