Katrina did well at school, has worked hard throughout the pandemic and keeps herself fit with clubbercise.

She says: I have had congenital nystagmus all my life and I have never let it hold me back.

This is Katrina’s amazing nystagmus story

My name is Katrina, I am 22 years old, I attended mainstream school and college and have got a Level 2 Business and Tourism and a Level 2 and 3 IT qualifications.

For the past 2 and a half years I have worked on a number of contracts with Vision Express, for Carlisle City Council and in two different schools.

I also attend Clubbercise once a week in a local community centre and also Girl Power fitness classes. These have helped me keep normality in my life during the COVID pandemic.

I have had congenital nystagmus all my life and I have never let this hold me back, especially through school and college.

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

Tim has a whole clutch of awards for his work.

He says: I ain’t done bad for a lad that can’t see too well.

This is Tim’s amazing nystagmus story

I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive.

After leaving school I took a degree in Fine Art in Nottingham and then moved on to the Royal College of Art where I took a Master’s degree in film.

Somehow, despite my lack of visual acuity, I have managed to forge a career in post-production sound for film and television. 

Much of my work is re-recording dialogue with cast members and my hearing has been my asset. I may not be able to see dialogue in sync as well as my colleagues, but my hearing is what I rely on.

People I have worked with aren’t really aware of the full extent of my condition. I hide it well and none of the actors I have worked with have even noticed.

My work has taken me to the US and Europe and I have had a pretty successful time working on films such as “Chicken Run”, “Mamma Mia” and “Les Miserables”, as well as major TV series including “Brave New World”, “The Nevers” and every episode of “Game of Thrones”. You can hear my voice in many of these shows, too.

I have been nominated for numerous awards along the way and have won seven MPSE (Motion Picture Sound Editors Guild) Golden Reels and four Primetime EMMYs. I ain’t done bad for a lad that can’t see too well.

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

Earlier this year, Doug ran the Royal Parks Half Marathon for the Nystagmus Network. He raised £200.

Doug says: 13.1 miles. 25,000 steps, a step for every time someone has told me I need to have my glasses checked.

This is Doug’s amazing nystagmus story

I was born with congenital horizontal nystagmus and astigmatism, thought to be due to ocular albinism. It was noticed by my mum at birth as her wobbly headed child started his driving-licence-restricted, squinting-to-focus life. I was brought up no different to my brother, people commending my parents for not letting my condition hinder or stop me, to which they replied, “what disability?!”. I had a reading board at school, extra time in exams and looked left in school photos (the side my eyes move less). I was encouraged to play any sport I wanted. Finding out the hard way that cricket was not for me after taking two balls to a sensitive area and being caught out with 2 runs. I have always been a keen swimmer, runner, cyclist and still play squash (I can play due to the simple black/white contrast). During my self-conscious teenage phase at school, I didn’t wear glasses and struggled on. I would sit at the front of class and luckily had helpful teachers and friends. My friends poked fun at me by creating bespoke miniature eye test charts and were in hysterics when they saw my “blown up” GCSE geography exam map. It took up two tables and I had to walk around it like a war cabinet preparing for an ambush. It was joked in my yearbook that I couldn’t see past the end of my nose, unsure whether this was because of my rubbish eyesight or my big nose.

I only started wearing glasses again during sixth form and struggled, due to astigmatism, to wear contact lenses. Now, I cannot imagine not wearing glasses, even with my lockdown moustache and big nose, I look like a joke-shop disguise. After sixth form, I was lucky enough to accept a place at Sheffield University to study medicine. Their disability and dyslexia services were brilliant and although I did not have to call on them, were thorough in the assessment of my needs and in offering me support.  I graduated from medical school and started Emergency Medicine training after my foundation doctor years. I am currently on a year out and undertaking a Sports and Exercise Medicine Masters. I have been fortunate enough to continue my passion for sport by having experience during university working with elite-level teams and I currently work for a Premier League team and their academy as a doctor.

I have struggled to come up with lots of examples as to how I have had to adapt to life with nystagmus. I am thankful for my parents bringing me up with no fuss and just getting on with things. One major example is driving. I was told early on that I wouldn’t be able to drive and therefore wasn’t disappointed when at 17, all my friends were learning. Instead, my friends became my chauffeurs or taxi drivers. As a result, I have had to become public transport savvy – I say as the bus I wanted drives past my squinting face because I struggle to see the numbers.

I was introduced to the Nystagmus Network charity after my girlfriend pointed out Richard Osman, the nystagmus messiah, on TV, although to me his eyes look normal… I am amazed by the charity’s work to support those with nystagmus and spreading the word about the condition. It is a wonderful community. I was incredibly proud and emotional running the Royal Park Half Marathon and raising money for a worthy cause so close to my heart.

I was going to open this blog by saying “I have suffered with nystagmus for…”. But this is completely incorrect, and I do not see my nystagmus as a hindrance. I see it as my condition that makes me “me” and one that I have had to adapt to throughout my life without necessarily realising. I do not think it has held me back or stopped me doing anything. I would love to inspire young people with nystagmus, or parents of, to continue adapting and to not let it hold them back from doing what they want to (within legal limits as you may not legally be allowed to drive).

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]