Life with a rare eye condition

Post date: 
Monday, 23 July 2018
Gareth in a street in Japan, smiling at the camera

Connect Community member, Gareth Brannigan shares his experience of living with a rare eye condition. Gareth talks about how it affects his vision, his day-to-day life and why it hasn’t stopped him from living life to the full.

I was diagnosed with a form of Macular Degeneration called Juvenile X-Linked Retinoschisis when I was six years old. My parents noticed that I couldn’t recognise my family as they walked towards me, or see pictures clearly in books. Because of this, I was taken to an optician where they did some basic eye tests before referring me to the Royal Victoria Eye & Ear hospital in Belfast. That was where I was diagnosed with my condition. My eyesight deteriorated early on, but has become stable over the last 15 years. As the condition is genetic, my two younger brothers were also tested and diagnosed with the same condition.

Facts about my rare eye condition

  • Juvenile X-Linked Retinoschisis is a rare inherited eye condition that causes the layers of the retina (the light sensitive tissue at the back of the eye) to split. The part of the retina affected will have poorer vision.
  • The condition starts in childhood and occurs almost only in males.
  • The condition affects my macula (the central area of the retina) so the sharpness of my vision and my central vision is most affected.
  • Doctors told me a second decline in vision typically occurs in the fifties or sixties.

How it affects me

I consider myself to have a pretty good level of useful vision at this point in my life. I am unable to drive but I can get around independently using public transport. With my vision being very blurry anything over a few feet away, there are some things I struggle with.

I can’t make out people's faces from any distance other than up close which means I have become quite good at recognising people by how they walk, their shape and how they hold themselves. I also have trouble dealing with very bright or dark places, as well as adjusting between them. Reading information boards at stations and airports is also a nightmare, I’ve become very good at asking for help!

Not letting it hold me back

I wear glasses but they don’t correct my vision problems, they simply help make the blur a little less blurry. This often raises questions from people such as: “Do your glasses not work?” or “Why are you sitting so close to your computer screen with glasses on?” This can be a source of anxiety and frustration for me when meeting new people, especially in a workplace setting.

However, my sight loss has not stopped me from living a full and happy life. I love to travel and explore new places. I moved from Belfast to London to start my career in recruitment about five years ago but there were some things I found difficult, like networking events because I couldn’t read people’s name tags. I moved to Australia a couple of years ago and now live in Melbourne with my amazing and supportive wife (who reads the TV subtitles for me and is my personal chauffeur!).

I work for a Talent Management software company called PageUp. They have been extremely supportive with my condition, from installing screen reading software, to getting me a larger monitor and even taking out the fluorescent bulbs above my desk. They really have gone above and beyond to help me do my job without having to worry about my condition getting in the way and are a great example of what every company should strive to do.

Staying determined

Growing up with a visual impairment can be overwhelming, frustrating and a little scary at times. However if you are determined and surround yourself with legends, there's nothing you can’t achieve in life.

 

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