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.


How amazing is Gary?

Here’s Gary’s sporty nystagmus success story …

Since 2014 I’ve been playing county cricket for Warwickshire Visually Impaired Cricket Club. The club comprises players of all ages (my shirt number is 49 – the age at which I made my debut) and varying levels of sight. Several of our players are registered blind and we also have two players with albinism who have nystagmus.
Blind cricket follows most of the laws of cricket, with a few modifications. The ball is white and bigger and contains ball bearings to assist the players with a lower level of vision. The stumps are bigger and the boundary is slightly shorter. Totally blind players are allowed to take a wicket with a catch on the first bounce. Each team must have a certain number of players of each sight classification. My classification, awarded after a high street optician sight test and referral to British Blind Sport, is B4 (high partial).
The game has taken me around the country and I’ve played in two T20 Finals days. We have also won the County Championship twice.
I’ve relished this belated opportunity to play cricket again, especially as I had to give up the “red ball” game at primary school due to risk of injury.
I would recommend the game for anyone who likes sport, regardless of their age or gender as we have mixed teams.
More information can be found on the Blind Cricket England and Wales website.

How amazing is Maureen?

Maureen tells her own nystagmus success story …

I started school in 1945. They didn’t have the pre-school checks they have now.  No-one had noticed anything out of the ordinary. I was riding a two wheel bike before I was 4. I used to bump into things and fall off regularly, but nobody saw anything wrong, they just put it down to my age and being clumsy.  On my first day at school I came home saying I couldn’t see the blackboard. My parents said to ask if I could sit at the front, but I said I was sitting at the front. The school then got the nurse to check my sight. When they found I couldn’t see the top big letter I got referred to the hospital. I was prescribed dark tinted lenses and told to go back in 6 months. I then had clear lenses. All this time I was always reading comics and books. My parents were brave enough not to stop me doing anything. I continued riding my bike and reading. All this time I was going to the hospital every year for  eye tests. One year my sight had improved so much that I was able to get a driving licence. My sight continued to improve until I entered my 50s. I still have good enough sight that I only wear my glasses when we go out. I’m now 73 years old and have to have a new licence every 3 years.  I have to have a sight test. Last time I was sent to the test centre where I had to prove that I could read a number plate at the required distance. I passed, no problem. My nystagmus was caused by my Mother having rubella during her first 3 months of pregnancy. I consider myself as very, very lucky.

I believe my eyes gained in strength, because of my parents’ bravery in continuing to let me do the things I loved doing.  They were very supportive and encouraging. I hope this may help somebody and give them some hope that sometimes things can get better.


How amazing is Macy?

Like lots of children, Macy has nystagmus as well as more serious health problems. Here’s her story, as told by her Mum …

In January 2016, Macy our baby girl suffered a sudden out of hospital cardiac arrest at 3 months old. After being resuscitated twice, once by paramedics at home and again at Wigan hospital, she was transferred to Alder Hey Children’s Hospital in Liverpool. The following hours/days/weeks are mostly a blur. 

Macy was so poorly, she spent time in isolation in PICU, with one to one nursing care. At the worst time in our lives those nurses/consultants were exceptional. She then spent weeks on the cardiac ward, which was probably harder than PICU as she was conscious and in pain and it was just unbearable. She was subsequently diagnosed with Dilated Cardiomyopathy, Cone-Rod Dystrophy and Nystagmus.

Macy is still seen regularly at Alder Hey by a cardiologist, neurologist, ophthalmologist…the list goes on.

After genetics testing, Macy has since been diagnosed with an ‘ultra rare’ disease called ALSTOM Syndrome, which is an inherited autosomal recessive syndrome characterised by the onset of obesity in childhood or adolescence, Type 2 diabetes, often with severe insulin resistance, dyslipidemia, hypertension and severe multi-organ fibrosis involving the liver, kidney and heart. Alström syndrome is also characterised by a progressive loss of vision (Cone-Rod Dystrophy) and hearing, a form of heart disease that weakens the heart muscle (dilated cardiomyopathy). This disorder can also cause serious or life-threatening medical problems involving the liver, kidneys, bladder, and lungs.

Nystagmus is just one of many of Macy’s symptoms, but she doesn’t let any of them stop her!

How amazing is Michael?

A nystagmus Dad writes:

Michael is 19. In 1999 he was diagnosed with congenital idiopathic nystagmus at around 3 months of age. We immediately did an internet search to find out what nystagmus was. I couldn’t even spell it properly, but within a short time we found Nystagmus Network. This turned out to be a huge benefit to us. We were put in touch with people with first hand knowledge of the condition. I’ve still got my notes from my initial conversations with Katy and Claire and the messages we received from John, Sue, Vivien and all the team after becoming members were most reassuring. We attended Open Days and our understanding grew. In terms of raising awareness and helping us come to terms with it, Nystagmus Network really hit the mark.

It was through the charity that we learned of Professor Irene Gottlobb and her team at Leicester Royal Infirmary. We secured a referral and Michael had countless eye recordings with Rebecca McLean, tests, clinical visits and an operation to partially correct his null point.

As Michael grew up we noticed how little his condition seemed to affect him. He was always a good athlete, playing junior football from age 5, was in the Cubs and Scouts. He swam competitively. Nystagmus didn’t seem to hamper him. However, looking back, this was masked by his ability to adapt. He struggled with fast moving ball games like cricket and badminton and the concentration required when reading. Doing his school work greatly fatigued him and studying still does. All through his school years he received terrific support from his SENCo, who became a real support for his Mum and me. We cannot thank Marie enough for her support for Michael during his time at junior and senior school.

We were all so proud of Michael when he achieved stellar results for his GCSEs and then his A-levels. In 2017 he was accepted by St. John’s College, Oxford where he is just finishing the first year of his Physics degree. He thoroughly enjoys being at Oxford, plays football for the college and fully participates in all the ‘liquid’ social events intrinsic to college life.

Michael’s success is due in no small part to the dedication and hard work he puts in, which takes a lot of effort due to his nystagmus. He has natural ability and great focus (no pun intended) and this has enabled him to overcome his disadvantages. The extra time during exams was essential to him at school and now at Oxford. He has been lucky. His condition could have been far more severe, but he has worked within his limitations to achieve the best he can. Long may it continue.

He passed his driving test in 2017 – which was the one thing we always wondered about. He has to be careful driving at night and he will never be a racing driver, but as long as he can get from A to B safely, to enable him to get on with his life, that’s all we can ask for.

I hope others may find some inspiration in Michael’s story. He has had to accommodate a severe disadvantage, but, essentially, it hasn’t held him back. He has exceeded all our expectations. The measure of that is not a place at university, but that he has simply got on with it and done his best.

How amazing is Chris?

If you ever visit our Facebook page you will know Chris. She’s very knowledgeable about nystagmus – and sight impairment generally and so generous to everyone with her time and support.

Here’s her amazing nystagmus story:

Back in 1973, living at home with my parents, I read in our local paper about a new national organisation for people with partial sight. The founder of the Partially Sighted Society was keen to support parents of visually impaired children. A new local group was looking for members. I just had to do it.

My parents didn’t really want me to join: they wanted me to mix with sighted people after all my days at schools for the partially sighted. But, I was over 21 so I went along. There were a couple of people my age, but, later, a new chap joined. He’d come to work at the local teacher training college. He fitted in well. He had his own home. The rest of us lived with our parents still.

As time went on, we worked at his house setting up everything needed to run the group. Then along came community radio. Our local station set up a community programme, aired every weekday evening. It was 1976, that long hot summer. Mike and I got married towards in the July. My now husband had come to work with trainee teachers as an audio technician. He knew about radio station technology, he knew how to plan lessons so, in effect, he knew how to create radio programmes! We did our first live radio programme together with a few friends.

Over the years I’ve done the occasional interview for local radio as part of the PSSMy real mentor on visual impairment, however, then and now, is BBC Radio 4’s “In Touch” programme and their chief broadcaster since the 1970s, BBC Disability Affairs Correspondent, Peter White. At first I sent in letters, then later emails. My letters were read out, or we read them out down the phone. I was contributing often enough to get myself known. The producer, Cheryl Gabriel, credits me with being in her first programme in the 1990s.

My biggest memory, however, was in the mid-1990s: the internet was everywhere. In Touch had produced an annual handbook in print and other formats for some years and small subject-related guides. At this point I was a parent as well as a volunteer with a, by then, national organisation for parents with disabilities. The In Touch book had a chapter on parenting and was re-written that year. I offered to proof read it, then I read the whole manuscript, because it was there. I was invited to launch the book at that year’s “Sight Village” in Birmingham. 

In 2000 our 18 year old sighted daughter got a place on a music production course at the local college. She did a B Tech and then her BA. She wanted to be an audio technician, like her Dad, but she knew Dad wouldn’t be giving up his job till retirement! The peak of the course in the first year was ‘live’ students’ radio on the campus. Hazel was asked if she’d like 6 weeks’ work experience. Today she’s still there as manager! 

Proof that one’s daughter has faith in you: over the years I’ve taken in my CDs for World Music programmes. I have a collection of Chinese traditional and folk music. When possible, I’ve used the weekly community show to talk about nystagmus around Nystagmus Awareness Day. I’ve also been interviewed by young people with very complex needs who produce a weekly music show aired on the internet. Hazel was taught to BBC standards, so too are the students she now teaches.

Thanks to Mike’s business (he specialised in classical music, choral and orchestral work as well speech recordings) I’ve been drafted in as a female voice on local radio adverts. The scariest thing ever was wandering into a local supermarket and hearing my own voice scream with frustration (an advert for a local electrical shop about a broken TV at Christmas), or singing softly with our daughter a nursery rhyme to open a recording of a piece of history in a series for schools.

And “In Touch? I was invited to their 40th anniversary and then their 50th. It was a two programme recording and one guest was the actor, Ryan Kelly, who has a role in a long running radio ‘soap’. I was able to ask him a question on air. Since last December, I’ve made 3 more appearances on “In Touch”, two with Mike. I still can’t believe it! I also did one TV programme. Someone on the internet casually asked for ideas for a show about disability. Mike and I are passionate about cooking products and techniques, as visually impaired people. I stayed up late, idly typing lots of ideas and the whole lot was accepted without edit and filmed on a hot spring day in my kitchen. Fun, but hard work. Mike stayed at home to help. I found it hard to know how long to hold a shot before the camera stopped rolling. I’ve not been tempted again.

Had I ever wanted to go into broadcasting? No! With very poor GCEs in maths, English and science, I wasn’t anywhere near ‘A’ level standard. Any job was hard to find in the 1970s, when medicals had to be passed. I was a woman with an obvious sight impairment. I joined my dad on the railway as an audio typist (a common job for the VI man or woman then).

Before I met my husband, he’d started his own recording studio business from home. Despite poor sight, not nystagmus, he was in demand by staff and students to produce LPs of choral music. This was my path while bringing up our daughter and continued until very recently when we decided it was time to retire. Mbroadcasting and voluntary work has fitted round the business. Amazing, indeed. The broadcasting couldn’t have happened without my husband of nearly 42 years and our lovely daughter’s confidence in us both.

How amazing is Dave?

Here’s Dave’s nystagmus success story, in his own words.

I have congenital nystagmus. The main limitation I have experienced is not being able to drive. However, at the age of 68, I can reflect on what I have been able to achieve in my life and feel very happy. I have been happily married for 45 years, have 2 grown up children and 2 grandchildren.

I spent most of my career in Personnel Management (HR) and retired as Head of Department in a Surrey Local Authority. Academically, I was a Fellow of the Institute of Personnel and Development and also gained a Masters Degree at Brunel University.

In my retirement, I run a walking group, am a bereavement counsellor and have set up and run The Wonderyears, the UK’s oldest seniors rock chorus and band. The group has been filmed by national TV and reached the quarter finals of Britain’s Got Talent!

I hope this can be an encouragement to others, particularly parents of young children who have nystagmus, to illustrate that whilst having the condition can limit some activities (such as driving) life can still be great fun and very rewarding.

How amazing is Denni-Leigh?

A Mum’s story:

Denni-Leigh was born weighing 5.15lbs on a sunny June morning. She was a perfectly beautiful newborn baby. Only at about 4 weeks old the health visitor noticed that something was wrong with her eyes.

We were told that Denni-Leigh had congenital nystagmus, astigmatism and a squint and was extremely long-sighted. Being such a young mum and not understanding anything that they were saying to me, I was very confused and very shocked. As we went on going to more and more appointments we were told that Denni-Leigh would not be able to live a normal life and do the things other children do, like ride a bike, learn to read, go to mainstream school.

But my beautiful little girl just sat there smiling and that gave me the strength and the determination to make sure she wasn’t treated any different. So she started mainstream school, a little bit behind everybody else, but she was never put off by anything. She learnt to ride a bike at the age of 7. Then came the decision to send her to mainstream secondary school. I’m so glad I did. She has gone from strength to strength and has proved everybody wrong and is now sitting her GCSEs. One day she would like to be a lawyer and change the way people think about people with visual impairments.

She is registered as visually impaired, but that has not put her off doing anything if she puts her mind to it. She will get there in the end. If anyone asks her about her eyes, then she proudly says, it’s just me, I have wobbly eyes. She is the most amazing, kindest and most caring big sister to her 5 little sisters. I am so proud of the beautiful young woman my daughter has become and it’s an honour to be her Mum.