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 Ben?

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 Ben’s story, submitted by his Dad, Phillip:

Ben was told a few years ago he wouldn’t ride a bike or play golf, because of his eye condition!!! He learnt to ride his bike the next day and here he is about to play a team match at golf.

Well done, Ben!

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.

Acquired Nystagmus Group logo.

Our new support group for Acquired Nystagmus

The Nystagmus Network is contacted more and more often by people living with Acquired Nystagmus. Experience of this condition is very different from Congenital Nystagmus in a number of ways.

Often people have had no previous sight problems at all when the nystagmus develops and the changes in their quality of life can be quite devastating.

The Nystagmus Network is setting up a new peer to peer support group for people with AN. It doesn’t matter whether you’re newly diagnosed or have been living with the condition for years. You’re welcome to join us to share your concerns, your highs and lows and maybe work together to find some solutions.

The group is lead by Nystagmus Network’s Sue and our fabulous new volunteer, Patricia. We will meet virtually, initially, through email or Whatsapp and we hope to set up meetings in the future.

If you or someone you know could benefit from chatting with others living with Acquired Nystagmus and would like to join our group, please contact us today. There is no charge and everyone is welcome.

Nystagmus and Driving front cover.

Let’s talk about driving at Open Day

Following the changes, earlier this year, to requirements around nystagmus and driving in the UK, we have asked a medical expert from the DVLA to come along to Open Day 2019 to answer all your questions.

Dr Gareth Rees will join us in Cardiff to lead an informal question and answer session, so whether you’re a new driver or have been driving for years, or you know a young person about to begin lessons, hear firsthand about the DVLA sight test and whether or not it is legal and safe to drive with nystagmus.

Until Open Day, please refer to our free to download publication ‘Nystagmus and Driving’ and the DVLA website for information and guidance.

Dan Williams crouches beside his guide dog, Zodiac.

“I’m struggling to see at work”

A guest post from our Open Day 2019 keynote speaker, Daniel Williams, founder of Visualise Training and Consultancy:

Losing eyesight is both challenging and difficult, scary and disconcerting. Having to change the way you do things, adapting to new challenges and learn new skills can be exhausting. Perhaps one of the most difficult aspects of eyesight deterioration is the uncertainty around employment. Sometimes it may be hard to tell somebody at work about your sight loss for fear of losing your job and you may struggle with tasks and suffer from eye strain or headaches because you are trying so hard to cope. Or, you could be afraid to tell your manager in case they think that you can no longer carry out your daily tasks as efficiently as you used to and this may lead to unemployment and all the uncertainty and ambiguity this may bring.

Let’s think about the common symptoms of sight loss, and how experiencing these symptoms may make you feel:

  • You may find the computer screen difficult to see
  • You may experience eye fatigue or pain
  • You may struggle to recognise colleagues
  • You may be struggling to get around
  • The lighting may be giving you discomfort
  • You may be getting tired
  • You may be finding print difficult to read
  • You may be getting constant headaches
  • You may think you are being clumsy
  • You may not be able to see your keyboard clearly

Experiencing just one of these symptoms may make you feel worried, uncomfortable or anxious. If not checked, in time, these feelings may escalate and cause you to struggle in both your work life and private life. But it is important to understand that help is available and that you don’t have to be totally blind to get help. In fact, the vast majority of visually impaired people in full-time employment have partial or useful vision. Don’t give up your job, just because you’ve lost your vision.

The Equality ACT 2010 protects you against disability discrimination. Your employer has a duty to make reasonable adjustments.

Visualise Training and Consultancy can carry out a work-based assessment to assess your needs and not only give you and your employer ideas on how to make your work life easier, but they will also write a full report, detailing any special equipment or alterations that can be made.

Let’s take a look at the four most common problems that may occur in the workplace for people who are losing or have lost some of their eyesight. Alongside the problem, we’ll look at possible solutions.

“I can’t see my computer screen very well any more…”

This is a common issue that can be tackled in a number of ways. You can use a bigger screen, use an anti-glare filter on your screen or change the colour scheme and text size within Windows. Failing this, a special screen magnifying programme can be used to enlarge what’s on the screen and change the colours and contrast. In some cases, a special piece of screen reading software such as Jaws or NVDA can be used. This will read-out what you type and tell you what is on the screen. Some people may use a mixture of screen reading software and screen magnification software, others may exclusively use screen reading software.

“I’m finding print difficult to read…”

A hand-held magnifier can be used to enlarge print, but technology can also be used. A CCTV/ video magnifier  can make reading easier, as can coloured filters and smart phone apps such as KNFB Reader and SeeingAI. Sometimes, scanning a document and reading it on a screen suits some people, as does experimenting with different lighting. In cases where the print is too challenging for technology to tackle, Access To Work may pay for a PA or Support Worker to help you read documents.

“I suffer from headaches and eye strain…”

If you try to exceed the limit of your vision it can be very tiring. Sometimes, headaches and eye fatigue can be environmental, caused by bright, fluorescent overhead lighting or poor task lighting. Often, tweaks to the environment and regular breaks can help prevent discomfort. Also, a good quality, consistent light source can make a lot of difference.

“My sighted colleagues don’t know how to support me in the best way”

Remember your colleagues may not have ever worked with someone with reduced vision. So be loud and proud, tell them what you need and how best to communicate with you. They may also benefit from visual impairment awareness training to understand how best to support employees with sight loss.

“I can no longer drive…”

Losing your driving license because of sight loss is very common and very worrying. However, there are ways to tackle the problem. Discounted rail and bus travel can be acquired with disability passes, making travel to work on public transport cheaper. However, if you have to travel to appointments within your role, or if using public transport is impractical, Access To Work may pay for taxis. This makes life a great deal easier and eliminates some stress.

These problems and more can cause high levels of discomfort, stress and anxiety. It is important to remember that help is available, and that communication is often the key to starting the journey to positivity and a sense of equilibrium. Don’t suffer in silence. The Equality Act 2010 is on your side:

The Equality Act 2010 legally protects people from discrimination in the workplace and in wider society

It replaced previous anti-discrimination laws with a single Act, making the law easier to understand and strengthening protection in some situations. It sets out the different ways in which it’s unlawful to treat someone.”

To book a workplace assessment, please visit Visualise Training and Consultancy.

Dan Williams crouches beside his guide dog, Zodiac.

Referrals change lives

In a recent article published by Vision UK, Founder of Visualise Training and Consultancy, Daniel Williams, discusses the importance of referring patients from the hospital eye clinic or High Street optician’s on to local or national services offering condition specific support and information.

It’s time for your regular appointment at your local high street optician. Each year you receive a reminder letter and you go along feeling relaxed and ready to enjoy the rest of your day after your appointment is over. Thousands of people do this every day and many thousands do come away feeling happy and relieved and go on to shop or see a friend, putting the appointment behind them for another six or twelve months.

But what about those who come away feeling worried?

Read the rest of the article, here.

Meet Daniel at Open Day 2019.