Thank you, King Cross Surgery!

The Nystagmus Network is hugely grateful to King Cross Surgery in Halifax for their amazing support on Nystagmus Awareness Day 2018.

Practice Manager, Heather, whose 8 year old son has nystagmus, says:

“The Network was and is an invaluable resource to us as new parents, to understand his condition and how it may affect him as he grows.

At the start of 2018, the Practice’s Patient Participation Group (PPG) agreed a number of charities it would support throughout the year. They agreed that Nystagmus Awareness Day on 20 June would be the first.

Members of the PPG drummed up support from local businesses to donate raffle prizes and we held a bake sale for the Wednesday itself. We had 15 raffle prizes ranging from a £30 Tesco voucher, pamper hamper and produce hamper to jewellery, wine and chocolates. Staff and patients alike bought tickets for the raffle (£1 each) and this was drawn last Friday.

The Bake Sale was very successful. We used the resources sent from the Network to promote awareness of the condition and I spoke to patients about it when they visited the stall. We raised £247!

We put up a small display opposite the reception desk to promote the raffle and the Network. A patient who has nystagmus was so impressed with this he took a picture and said it was the first time he’d seen anything about nystagmus in a health care setting! The need for raised awareness is clearly there.

Other practice managers around Calderdale contributed to the raffle and a couple of them will be holding similar events in their practices to raise more awareness and funds to support the great work the Network does.”

THANK YOU, Heather and everyone involved!

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.

An inspiring meeting with David Katz

The day before Nystagmus Awareness Day 2018, Information and Development Manager, Sue, and trustee, Peter, travelled to London to meet a very inspirational man – internationally acclaimed ‘blind’ photographer, David Katz. Several exciting nystagmus-related projects were discussed – more of those to come.

David will, of course, be the charity’s guest speaker at Open Day in September, bringing us stories of his long and illustrious career in photography, the experience of making his film, Through my Lenses, and, most recently, his assignment of a lifetime to the PyeongChang Winter Paralympics.

Charity trustees meet Marsha

On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible.

Meeting at Portcullis House, trustees, all wearing their Nystagmus Network T-shirts, briefed Marsha on the awareness-raising work of the charity ahead of her keynote speech at Open Day this September.

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.

Did you come to Snow Camp?

It was a fantastic event. There were so many amazing people there to inspire adults and children to get out on the slopes and enjoy the snow. David Katz was there, sharing stories of his amazing photography career, despite having ocular albinism and nystagmus. The Outspan Rebels VI ski team were there, with their amazing Head Coach, Charlotte Evans MBE … and Menna and Jen were there, fresh from their medal success at the Winter Paralympics in PyeongChang.

It truly was a fabulous start to ‘Wobbly Week’ 2018. Huge thanks to Jamie Fuller for making it all happen – on Father’s Day!

We have another Snow Camp coming up on Sunday 15 July. Please contact us, using the form below, if you’d like to come along.

 

 

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.