Paul Rose headshot.

Paul’s Story

For those who may not know, I’ve lived with a hidden disability called torsional nystagmus since birth. This condition affects the way I see the world, sometimes making it blurry or shaky. You might think I’m looking at you in a funny way, but believe me it’s not you. It’s me!

If somebody is showing me something to read on their mobile phone or on their screen at work, it’s an extra challenge for me to focus and read. I get there, but it takes just a little bit of extra time.

Despite its challenges i’m so happy to finally (finally!) properly embrace my condition. Thankfully as I’ve had this forever, my brain does a lot of correction for me which is huge.

Others who acquire the condition during their life through injury or otherwise are not so lucky and their worlds are moving all of the time.

Joining the Nystagmus Network feels like an opportunity to not only deepen my own understanding of the condition but to support the one in 1000 people in the UK who have this condition.

Why Hidden Disabilities Matter:

The struggles big and small that we face are invisible to others, making it difficult to access support and understanding around what is one of many vision impairment conditions

That’s why the Nystagmus Network’s work is so crucial and together we can:

Raise awareness about nystagmus and other hidden disabilities.
Challenge misconceptions and break down barriers.
Advocate for inclusive workplaces and communities.
Support each other on our journeys.
I’m honored to be part of this mission and I’m eager to learn, contribute, and make a real difference.

That’s why the Nystagmus Network’s work is so crucial. They provide a vital platform for connection, information, and empowerment for people with nystagmus and their families.

You Might Also Like