How amazing is Ursula?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Today Ursula shares her own amazing story.

Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children with the condition, hope.

My Mum didn’t understand nystagmus and just thought I had wobbly eyes. The optometrist told her I would grow out of it (hahaha) and I was never checked up on again.

I didn’t understand what it was, and neither did my Mum, so I didn’t get any help through school at all and ended up leaving early because I was bullied (for other things, not my nystagmus).

I have lived a very normal life! It’s important to be correctly diagnosed, but it has also been a blessing because I never felt any different and just got on with my life.

I’ve never been held back doing anything. I went to college and did my GCSEs and A levels (without ANY help from the education system, or any extra exam time) and I am now studying online to become a level 3 personal trainer.

Alongside this, I’ve been a shift manager in a very busy coffee shop (Prêt a Manger) for the last 4 years and I am also a bikini fitness competitor.

Also, today, the hospital told me my vision is good enough to legally drive!!!! WHICH IS AMAZING!

Nystagmus is not a life ruiner. I’m not saying I don’t have any side effects from it. I can get dizzy, struggle to focus and night times are particularly hard for me, but I have just always got on with it, put out positive vibes to the universe and it has always rewarded me.

Never feel alone.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

Roger stands in his garden.

How amazing is Roger?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Here’s a story we just had to share. When Roger contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to describe how nystagmus affects him and he wants to encourage others to do the same so that everyone knows what it’s like. What better way to raise awareness of nystagmus?

Please read Roger’s description of his nystagmus and then scroll down to enter our ‘wobbly week’ competition.

This is me – Maximising minimal vision

What I see depends as much on my brain as my eye defect

My brain constantly makes the best guess about what I see. The smallest visual clue can be enough for me to guess/know what I am looking at.

I get tired, looking

It’s hard work with so few clues and so much effort and I get quickly tired trying to sort the detail, especially with reading print and close work.

Camera rules

I see best with the light source behind me without shadow, nothing dazzly in front. I need to move my head a lot to get the delicate focus right.

Colour contrast

If you want to get my attention, choose the colour of the object or word in contrast to the background.

Recognising people

Sorry, but unless I am expecting you, I am likely not to know who you are, even if you are friend or family.

Seeing steps

I might see steps up, but not steps down so please brightly mark step edges if you don’t want to be the cause of my fall.

Changes in light level

Be aware my level of seeing could suddenly change for the worse when moving from one situation to another.

Writing to me

I can read clear bold print this big (24 font) for a little while but not joined up or handwriting.

Emotions

Sorry I can’t see the expression on your face so please make it clear how you feel.

My turn

I probably won’t know when it is my turn unless you make it clear to me.

Embarrassment

Nowadays, I am not at all embarrassed by my sight loss, but as a youngster it was very different.

Seeing Colours

I see colours really well but not shapes and outlines.

Worsening vision

I am conscious my sight is getting worse and I am taking steps to cope with all this.

Close up

Close to my nose and with a powerful magnifying glass, I see more detail.

Dual sensory loss

More and more I experience a kind of sensory bombardment which is quite disturbing.

Competition

Inspired by Roger, we’re running a wobbly week competition asking you to describe your nystagmus in just a few words. For a chance to win some fabulous prizes, please enter the competition, here.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Poppy?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Poppy has ocular albinism, nystagmus, astigmatism. She needs to be approximately 1 metre away to see what normally sighted people can see from 6 metres. She never let’s anything stop her. She has just taken her grade 2 bbo ballet exam and grade 1 bbo modern dance exam. The highlight of her year so far has been competing with her dance team and, best of all, her fantastic dance teacher gave her a ballet solo, so she’s been busy picking a tutu.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Nabin?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Nabin has had nystagmus since my birth. His vision is 6/36. He tells us he’s had many troubles at school. He always needed to ask the person sitting next to him what was written on the white board. He couldn’t join in with his friends at sports, because he couldn’t play as well as they could. But now Nabin is 20 years old and has just started a bachelor level course in computer engineering.

Good luck, Nabin!

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Hanna?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Today we introduce our friend, Hanna

Have you met Hanna? Hanna has congenital nystagmus and lives in Germany. She has been coming to the UK Nystagmus Network Open Day for a number of years and recently achieved her goal of setting up a German Nystagmus Network, too. It was incredibly hard work, but Hanna achieved it and now her own group is growing from strength to strength. Find out more about the German Nystagmus Network, here.

Hanna – we think you’re amazing!

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Calum?

Once again, in the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Here’s Calum’s story, by his Mum, Katie

Our son Calum is now ten years old and has congenital nystagmus. 

When he was first diagnosed we were told his eyesight was so bad he wouldn’t be able to do so many things.

However over time Calum has proved everyone wrong. He attends mainstream school (with input from a visual impairment teacher), has a wide circle of friends and doesn’t let anything hold him back.

He loves cycling and swimming and takes part in duathlon classes and triathlon competitions within his school. 

He also recently competed in a swimming gala.

And despite being told from very early on that he would never drive he loves cars, especially super cars! In fact when we are out driving and Calum spots a car he can name the make, model, engine size etc from a fair distance – quite an achievement! 

I’m not saying things aren’t difficult for Calum and he does have to try harder with a lot of things but we are so proud of everything Calum has achieved so far! 

Nystagmus Network: We look forward to seeing Calum on the real Mastermind in a few years’ time. His specialist subject? Super cars, of course!

If you would like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Caitlin?

Once again, in the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Here’s Caitlin’s story:

Despite the difficulties of living with nystagmus, I have never let it hold me back. I took up opportunities for support during school and university and have worked hard to cope with life with a disability.

When I was 14, I achieved a black belt in kickboxing and came third in Scotland in 2013. I play the bagpipes and guitar. In 2015, I climbed Kilimanjaro to raise money for a children’s charity. 

Now I’m 22. I graduated with a Law degree from the University of Glasgow in 2018. Since then, I’ve completed a postgrad in Professional Legal Practice.

Throughout university, I sought out opportunities to work with marginalised groups of people. I’ve worked with refugees, the LGBT community, the disabled community, and now I work with victims of sexual violence. 

My career goal is to become a human rights lawyer, fighting for the rights of those with disabilities.

Anything is possible! 

If you would like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Bradley

We couldn’t resist one more ‘amazing’ nystagmus success story. Not everyone with nystagmus can drive, but Bradley has turned driving into his philosophy on life.

My name is Bradley. I’ve had nystagmus since birth. My parents found out about it when I was 4. As a child, I was in and out of hospitals. It was tough for me as a kid with a funny eye. I wasn’t very self conscious at the time and didn’t think I was any different to the other kids, but there were limitations and I got bullied by some kids. I never let that get me down, though. My teachers were great, making sure I was right up front in class and giving me print outs so I had everything I needed.

My family never really understood my condition. That’s still very much true to this day. I hardly know about it myself. I’ve lived with it all my life, so I don’t know any different. People ask me what it’s like, but I don’t know how to answer. I say that words on a wall become lines or scribbles to me. I can’t make them out and it tires me trying too much.  But, if I’m on a cliff and there’s buildings in the far distance, I can see them. I keep my phone close to my face. I can’t recognise faces until quite close, so, if I’m out trying to find a friend in town or in a pub, I may walk straight past them. The only way I can describe it is seeing people’s figures but no face until I get closer. Then, as if a fog has cleared, I can see them. I hate going to fast food places. I can’t see the menu, even with glasses. I find they don’t really help me much, so I spent most of my teenage years not wearing them at all.

I hated my eyes. I got to a point where I wouldn’t want to meet new people as I really didn’t like the way I looked. But all of that aside, I’ve realised I’m me and that’s all I ever need to be. I don’t need to be afraid of what people think.

Ever since I can remember I’ve always loved cars. I never expected my condition could prevent me from driving. The day the doctor told me I’ll never drive tore me apart. I wanted to give up. That was it for me. But, thankfully, my mum got me back up on my feet. She always told me “It doesn’t matter what people say. You can do whatever you set your mind to. If you want to drive, prove them wrong. Show them you can do it.” I’ll never forget it. I took her advice and, as soon as I could, I got myself a job at a local bus depot which paid for my lessons and a car. I was determined. When my test came around, I failed, but I failed for forgetting to shoulder check. I passed the sight test! When I was ready, I took my test again and passed. I wanted to cry, I was so happy.

All my life they told me “you can’t”, but I did. Getting my licence was the best feeling in the world. I do have down days like the rest of us, but if you push through them you can achieve the impossible. With me, passing my driving test has opened up a huge opportunity to get into my chosen career. I recently started a vehicle panel beaters apprenticeship. My goal is to have my own business, buying and selling cars.

I’m very fortunate to have stumbled on my career and my mother’s wise words have all come true. Against all the odds, I’ve set myself on the path I’ve wanted ever since I can remember. I’ve never seen my condition as a disability, more as a challenge. I have come so far and achieved the unthinkable for someone who has a similar condition.

As much as I’ve got used to my eyesight, I do wonder how it would be to see through someone’s eyes for even a minute. But this is the way I am and I accept it.

If anyone tells you that you can’t, just challenge them, because, once you prove that you can, I guarantee you won’t feel like you have a disability. You’re just like everyone else, no matter who tells you different. Be who you are. Don’t change for anyone and, if a challenge comes your way, fight through it. We are fighters and we’ll do anything we put our minds to.

Please see our free to download booklet, Nystagmus and Driving, for information on the legal and medical requirements.

How amazing is Sara?

A guest post from Sara’s Mum …

This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an Irish sport) she plays rugby and Gaelic and is a coach for children in sports. Her next venture is to navigate in a tarmac rally with her daddy next month. She is a very positive and amazing child (in my eyes). Just posting this for all the new parents out there who may be worrying a little xx

How amazing is Amanda

Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story …

My Nystagmus Journey: Fifth grade diagnosis and beyond

Fifth grade – that’s when my life changed because of my nystagmus; that was the year I got my large print books and was registered as a student with a visual impairment.

Before I tell you about my reflection of that year, we must go back into my history. My mother knew something was not right with my vision from the time I was born. She took me to several eye doctors who basically said the same thing – Nothing is wrong with your child. For now she can read the print that is provided; just make sure she sits up front and rests her eyes when needed.

As I entered the school system and started to struggle with my school work, the doctors and teachers started to change their diagnosis. The first issue they found was that I had cerebral palsy; to fix this difficult issue I had all different kinds of therapy to help improve my muscle function. Then, in second grade, because I struggled with reading, writing and spelling I was found to have a learning disability called Dyslexia. This helped solve part of the problem, except for the fact that I still could not see well.

In fourth grade, the medical doctors started saying that I needed large print books and that my vision was poor. My teachers also started to really notice the problem. So, during the end of the school year, teachers started doing more advanced testing and that testing showed that, indeed, I needed large print.

My mother was so excited that her fight with the school system was successful and that I was going to receive the large print textbooks I needed. I, on the other hand, was not happy about this. I knew that I was different.

The next year came and so did the large print books. They were quite large and heavy. I surprised my teachers by being able to read better despite my Dyslexia. My grades even improved. This improvement did not come without a cost; I was teased by some of my classmates and some of my teachers were slow to understand all this new information. I still did well in my fifth grade year.

A year and a half later we moved from Texas to Florida. The school system for the visual impaired did things differently. They started taking away my large print books and they sent me to a low vision specialist who prescribed low vision aids. I was confused. The reason they did that was to prepare me for the adult world. For the first year I played their game and used my low vision aids, which made them happy. However, it made me unhappy, because I felt so limited on what I was able to see. The years passed and, in my last year of high school, I was almost rejected from the program because I was not using my low vision aids and I kept advocating for my large print when needed. During my last program interview, I told them why I did use my low vision aids. The program staff did what they could to help me until I graduated from high school.

After high school, I went to college with the help of two other programs and I was very successful. Now, with the help of the American Nystagmus Network and the Nystagmus Network UK, I’m sure I will be successful in my freelancing career and personal life.