Category: Living with nystagmus

The logo of the Landmark Trust

Our weekend away

Each year the Landmark Trust offers a limited number of stays in their historic properties to small charities. The scheme is called 50 for free.

Late last year the Nystagmus Network applied on behalf of members of our AN and Oscillopsia forum, thinking this would be a lovely chance for them to meet up in person and share quality time in a relaxed setting. Our bid was successful and we have been offered a lovely long weekend stay this March.

Eight people drawn from the forum will travel to their destination and enjoy getting to know each other in person in elegant surroundings.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus in March 2020. The forums have been very popular and continue to flourish with some lasting friendships made along the way. We like to think of them as friendly, informative a little haven away from worries about the outside world.

If you would like to join one of our online get togethers, please contact us by email at [email protected].

somoene selecting a book from a library shelf

What’s your nystagmus research question?

The Nystagmus Network has been investing in research since the 1990s.

Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.  

In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of electronic testing providing ever more accurate clues to the causes and likely impact of nystagmus.

Optical, medical and surgical treatments have also been developed to improve both the vision and the quality of life.

There has been much to celebrate.

But, despite some emerging signs of potential early interventions, sadly, prevention and cure still seem a long way off.

We need more research!

To kickstart more nystagmus research, we need two things: money and a good research question.

You can help us!

Tell us which aspect of life with nystagmus you think researchers should examine as a priority to achieve the greatest impact on people living with the condition by submitting your research question today. We will collate all your responses and put them to researchers in a bid to start some new nystagmus research.

Your research question should be:

  • Focused on a single aspect of life with nystagmus
  • Researchable using primary and/or secondary sources
  • Feasible to answer within a reasonable timeframe
  • Specific enough to answer thoroughly
  • Complex enough to attract academic interest
  • Relevant to the lives of people living with nystagmus

Please use the form below to submit your nystagmus research question.

The deadline for submissions is 31 March

Alternatively, you can make a donation to the Nystagmus Network research fund to help us continue to push the boundaries of scientific investigation.

a blurred street scene

What do we see?

In answer to the question ‘What does a visually impaired child see?’ the Thomas Pocklington Trust has produced a new video simulating the 5 most commonly seen forms of vision impairment in children and young people, including nystagmus. The film, What do we see? 2, shows what it’s like to have nystagmus, retinitis pigmentosa, infantile or juvenile cataracts, retinopathy of prematurity and optic atrophy. Footage was recorded in a school setting.

Members of the Nystagmus Network forum for adults living with congenital nystagmus viewed the first draft of the nystagmus simulation and helped shape the final version. We are very grateful for their feedback.

TPT said: “Thank you so much for all your support and guidance throughout the making of this. We couldn’t have done it without you.”

Watch the video on YouTube here

A postcard featuring some of the highlights of the Nystagmus Network virtual Open Day 2021 on Saturday 25 September.

Register now for Open Day 2021

Nystagmus Network Open Day – Saturday 25 September

 We promise a packed programme of presentations, inspirational speakers, research updates, videos, workshops, forums, competitions and so much more – all available wherever you are. Plus, you’re warmly invited to join a fabulous live and interactive networking event. The theme for this year is ‘How amazing are you?‘. We’ll be celebrating all of your successes! Following the success of ‘virtual’ Open Day 2020, we’ll be doing it all again, but this time even bigger and better and, of course, it’s all free of charge.

Register here to attend

Once registered, you will receive a digital programme containing links to all the presentations and live events.

UK governemtn leaflet about the local offer

Do you use your local offer?

Since 2014 all UK local authorities are required to put information about services for families with disabled children in a special web page called the Local Offer.

Have you found yours? Do you use it? Is the Nystagmus Network listed as a support service?

We’re trying to make sure that everyone receiving a diagnosis of nystagmus finds their way to support and information from the Nystagmus Network.

Please contact us to let us know how your Local Offer is doing.

Thank you

Watch his video to find out more

An adult is having her eyes tested.

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia.

Patsy’s story, a case study of AN and Oscillopsia

Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the research work led by Professor Chris Harris at Plymouth.

We will share the case study documents with this group as soon as we can.

The Nystagmus Care Pathway

Following a recent meeting of NUKE (Nystagmus UK Eye research group), there was a brief update on progress with the  Nystagmus Care Pathway. We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon. Sadly, these will not yet encompass AN in adults and children, but the plan is to make this NUKE’s next focus, with the support of colleagues in neurology.

Treatments

There was more discussion of drug therapies available. Baclofen, Memantin and Gabapentin are the most commonly offered drugs. These are all muscle relaxant types. Some people find them effective, for both AN and CN, whilst others find the side effects compound their symptoms of nausea or dizziness.

There are now two members of the group being treated with Fampyra (fampiridine, also known as aminopiridine). Each is experiencing slightly different, though generally beneficial effects. This treatment remains on trial and unlicensed in England.

Those wishing to be referred to Moorfields Eye Hospital, London where our two friends are under the care of Maria Theodorou, must make a request for a referral through their GP.

Gmail group

Attendees were offered the chance to join a Gmail group for adults living with acquired nystagmus and oscillopsia so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite them to future meet ups and keep them posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for adults living with AN and Ocillopsia. It’s there for you to help you connect with others.

Adults chat together

Notes from the February Forum for adults with congenital nystagmus

Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus.

ECLOs

Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Care Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at [email protected] if you need help finding your ECLO.

The Nystagmus Care Pathway

Thank you for sharing your thoughts on the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.

CBS

There was some discussion of Charles Bonnet Syndrome, where people with limited or failing sight experience hallucinations as their brain appears to be trying to make up for the lack of clear images coming in through the eyes. Some people with nystagmus, especially if they also have other eye or neurolical conditions, experience CBS. Talking about the ‘visions’ openly and rationalising them can help alleviate the symptoms. Please see Esme’s Umbrella for more information and support.

Laser surgery and ICLS

The Nystagmus Network does not recommend the use of laser surgery to correct refractive errors (short sight) in people with nystagmus from non NHS providers.

We are aware of a case where a patient with nystagmus has successfully undergone intracorneal lens (ICL) implantation in New Zealand but understand that this treatment remains at the trial stage and is not widely available.

Gmail group

Those attending were offered the chance to join a Gmail group for adults living with congenital nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact them via this group to invite you to future meet ups and keep you posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for adults. It’s there for you to help you connect with others.

Adults chat together

Notes from the January forum for adults living with CN

It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!). 

Here are just a few notes from our discussions.

Jigsaws online

There are lots of websites offering jigsaws to do onscreen. I tried TheJigsawPuzzles.com.You can change the background and make the image bigger, but obviously you are better placed than I am to road test whether it is fully accessible for you.

Colour by numbers online

One of our members recommended Happy Colour. You can find this on the Apple app store or on Google Play.

Audio description for TV

There’s an article on the RNIB website about getting audio description on TV.

Tinted glasses – yellow, brown or grey?

Following a little internet research on coloured lenses for glasses, it seems that yellow tinted glasses, whilst reducing glare, can actually reduce visual acuity and 3D vision, so probably not ideal for people with nystagmus. They seem to be promoted to aid night driving! The difference between grey and brown lens tints seems to be that there is less colour distortion with grey. It’s definitely best to seek professional advice from an optician.

Blue light glasses

Lenses to counter blue light from screens are widely available. I found this article by Specsavers. It includes this quote from The College of Optometrists: ‘The best scientific evidence currently available does not support the use of blue-blocking spectacle lenses in the general population to improve visual performance, alleviate the symptoms of eye fatigue or visual discomfort, improve sleep quality or conserve macula health.’

Visual Crowding

You can read a recent blog post here from the Nystagmus Network about Vijay Taylor’s recent research into the nystagmus related phenomenon of visual crowding (the challenge of picking out a single object or face). The post contains a link to the online publication of Vijay’s PhD paper.

Enlarging your cursor

There’s an article on Ability Net taking you through steps to enlarge your mouse on Windows 10. Apple have a similar item on their website on enlarging the cursor on a MAC.

Navigation

The apps mentioned to help with finding your way around on foot are Soundscape and Where’s the Path. Find them in the app store.

Looking after yourself

There are some excellent tips on staying safe and protecting your mental health and wellbeing on the Retina UK website.

Keeping Active

Whilst we remain locked down and the weather is cold, there are some great tips for indoor exercises and activities on the NHS website.

Staying connected – our Group Gmail

The Nystagmus Network offers forum members the chance to join a Gmail group for people with CN so they can keep in touch with each other more easily by email between zoom calls.

Facebook Group

Finally, please do join the Nystagmus Network Facebook group for adults living with CN. It’s there for you to help you connect with others.

If you would like to receive an invitation to the next forum, please contact us.

the logo of the University of Birmingham and VICTAR

Vision impairment and employment – a research project

Guest Post: Dr. Liz Ellis, VICTAR, University of Birmingham

The Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is conducting research to understand more about the factors which contribute to employment outcomes (the good and not so good) for individuals with a visual impairment, living and/or working in Greater London. This project is being funded by the Vision Foundation and will help to ensure their work is evidence-based and impactful.

We would like to talk with people with vision impairment who are working at the moment, those who are not working, those working in their dream job, those who are looking for a career move, those in part-time jobs, as well as those working full-time – we want to hear about a range of different experiences via an online focus group.

We would also like to talk, via an online focus group, with professionals who have experience of supporting individuals with vision impairment into employment.

Anyone who is aged 18 years or over, in Greater London and interested and able to help should click the link for more information and the option to register to participate. All participants will receive a £20 shopping voucher as a token of appreciation for their time.

For more information please contact Dr. Liz Ellis by email at [email protected]