Deafblind Awareness Week Living with Usher Syndrome – My Journey

AdaptNIs' Laura Lyttle shares her story this Deafblind awareness week - we are so grateful to Laura for sharing her story and are proud to have her as a key member of AdaptNI Team

Text of BSL video

Hello everyone,

My name is Laura Lyttle, and today I want to share something very personal with you—my journey of living with Deaf blindness.

I was born profoundly deaf and have used a cochlear implant since I was seven. But a few years ago, I started noticing something was changing with my eyesight. It began with night blindness when I was out with a friend as a teenager—I couldn’t see clearly once it got dark. Over time, my tunnel vision began to worsen, and it continues to deteriorate, slowly but steadily.

Eventually, I was diagnosed with Usher Syndrome, a condition that combines deafness and a progressive eye condition called Retinitis Pigmentosa. It affects the retina, where cells at the back of my eyes gradually die off. When I first heard the diagnosis, it was devastating. I remember thinking, What will my life look like in the future? There’s a real possibility that one day, I may lose my vision entirely.

Accepting that diagnosis wasn’t easy. But over time, I came to understand that this is part of who I am. I realised that asking for help isn’t a weakness—it’s strength. I started being open about my needs.

For example, I really struggle to go out at night—complete darkness makes it almost impossible to navigate. Busy places like concerts, shopping centres, or nightclubs are extremely challenging. I often bump into people, trip over obstacles, or walk into doors or walls—things that others might take for granted. It can be frustrating and emotionally draining, especially when it happens over and over again.

To manage this, I received long cane training, which helps in crowded environments. And when I’m out with friends or family, I usually link arms with them for support. I’m currently on a waiting list for a guide dog, which I believe will be life changing. It will give me more independence, confidence, and freedom.

Yes, I do feel scared sometimes about the future—what it might hold, how much more of my vision I could lose. But I refuse to let that fear define me. I focus on the things I can do and appreciate that I still have some central vision, which helps me navigate my daily life.

If you're someone who is Deafblind or in the process of losing your hearing or sight, please know this: you are not alone. I am always here to talk. Being Deafblind doesn’t look the same for everyone. Some people can hear and speak well, others may use sign language, some use tactile or hands-on signing—it’s a spectrum. And that’s okay.

One of my biggest concerns is the day I may no longer be able to lipread. That’s why I’m already preparing by learning hands-on signing—so I’ll still be able to connect and communicate with others, no matter what changes come.

Thank you for listening.