How amazing is Mehak?

Growing up with nystagmus and albinism, I hated school and social interaction. I was always self-conscious and easily embarrassed that my weak eyesight, poor balance and hypersensitivity to sunlight made me rubbish at activities like sports and hiking. I was, however, always good at academics and especially loved reading. In my early years at school, I enjoyed stories so much that I was usually a reading level ahead of my class. Writing, on the other hand, was much more difficult. My mother recounts how slowly and painstakingly I learned to form each letter and number, giving both her and my teachers a hard time throughout the journey. Then, in about the second or third grade, we began learning how to use computers and I promptly fell in love with technology. I loved typing instead of writing even though it was – and still is – difficult to read the small font on a computer (and now smart phone) screen. I was embarrassed to have to lean close to the screen, but I was also having too much fun to be deterred. As the years passed, I kept getting better at writing and using computers despite my weak eyesight. At college, I finally learned HTML and that led me to start a simple blog and customise it just the way I liked. I went on to pursue a master’s degree in Communication and topped the class. Today, I am a writer and online content creator, leveraging technology to do what I love, despite the challenges. Facing screens all day is often so tiring because my eyes strain easily and I don’t have the best posture while working (in order to see better). But I love what I do and I enjoy learning new technologies all the time. I am currently teaching myself web design and working on setting up my own website. I have been blogging informally for years but have decided to get more professional with it now. I am also working on my first novel and hope to finish it soon. I feel that having nystagmus and albinism has made me a much stronger, resilient and empathetic person. I still get self-conscious and afraid to interact with others, but I am also much more confident than I ever dreamed I could be. I appreciate the fact that every single person faces challenges, but we just have to keep going and work out a way to do whatever it is that we really want to!

How amazing is Rylan?

Rylan’s Mum says:

“My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side.
He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him and he gets very tired after a while.
He is amazing though!”

We think so, too! Well done, Rylan!


How amazing is Suzanne?

I wanted to share my story to show people with nystagmus that it doesn’t have to stop you from fulfilling your dreams.
I was born with nystagmus and my parents were told I would need lots of help and wouldn’t manage mainstream school. Well I did manage it, and also managed college, university, and thereafter a masters degree in Stockholm in Sweden. My chosen direction of study was light and health, and lighting in architectural design.
I have always loved the visual arts (ironically), but lighting was most important to me because of my nystagmus. I wanted to understand how lighting contributes to aiding or in some cases impeding the visual experiences a person has, particularly with nystagmus. The lighting we apply to a space, be it a church, an airport, a restaurant or hotel, or even a street lit at night, plays a significant part in our experience of that environment. Not just in terms of atmosphere, but also in relation to way finding, and whether we feel safe and comfortable in that environment.
I completed my masters degree ten years ago, and have since built up my career in architectural lighting. It has also suited my addiction to travel as I have visited many countries to study the local architecture as well as work related travel for various projects I’ve been involved with.
Being originally from Aberdeen, I began my first job as a lighting designer in Edinburgh. My itchy feet shortly got the better of me though, and I was soon enough back in Stockholm to take up a new position in lighting there. I am currently living in Hamburg in Germany, and have very recently started up my own lighting design company, through which I hope to raise further awareness of lighting and its importance for a more inclusive environment. Not just in Germany, but internationally…..wherever my work takes me really!

How amazing is Alfie?

My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined to get a place at Grammar School. He has just been on his third skiing holiday and was told by his instructor that he should start training to become a Paralympian!

How amazing is Ben?

Here’s an amazing story from a very proud mum.

When my second son, Ben was born, from about 3 months we noticed there was something wrong with his eye movements. After nearly a year of waiting, research and MRI scans he was diagnosed with Congenital Nystagmus.
We weren’t sure how this would affect him and it has all been a guessing game.
Ben’s just had a great year at nursery and we’re getting ready for him to start P1 in September. He has developed great and hasn’t let it stop him.
Such a positive, caring boy who’s had so many hospital and doctor appointments, any other child wouldn’t stick it.

How amazing is Freya?

I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.