a blurred image of busy outdoor scene with lots of people milling around

Living with nystagmus through a global pandemic

Learning to live with nystagmus, finding our way in the world and developing independence creates a range of challenges as we move through the stages of life. Whether we’re talking about an everyday experience or the bigger and more stressful events we face, we all need a certain amount of resilience.

There’s a balance to strike between knowing when to seek or accept support and when to resist. Having someone help you may be the easy way, but we also need to hold on to our independence, develop self-confidence and learn new skills.

The dictionary describes resilience as “the capacity to recover quickly from difficulties; toughness”. Ultimately, it’s something that’s developed through the challenges we face in our lives, often learnt from the things that might not go as well as we’d hoped. Misjudging a step, being misunderstood because we’re not looking someone in the eye, struggling to see a train departure board or a menu, all these build our resilience and that’s not diminished when we choose to ask for help.

The challenges of this last year have added an additional level to our need for resilience. Familiar routines and networks have been removed with the loss of many of the vital distractions, the random meetings, the events to look forward to. In addition, we’ve been bombarded with often unhelpful news tugging emotional strings, loosening attachment to normal life and adding levels of fear and uncertainty.

So, what can we do to retain or renew our resilience?

I’ve tried to keep perspective and challenge fear inducing messages.


Daily walks have been important for physical and mental health and have also meant that I’ve guarded against having to relearn basic mobility skills or redevelop the confidence to get out independently again when things return to normal.


I also think having hope is important, having plans for when this is all over, buying tickets for shows, planning a family get together or meeting with friends.

Personally, I find sport great for building resilience, keeping running when you really want to stop, not being disheartened by the disappointment of a defeat or an unlucky net chord in tennis or a bad decision from an official. 

Sometimes we face bigger challenges: ill health, loss of loved ones, struggles to make ends meet or to find employment. It can feel that nothing has fully prepared us for these and yet learnt resilience can still help. Perhaps a capacity to accept our vulnerability can help the development of resilience, freeing us to accept support where we need it.    

The logo of international Albinism Awareness Day

International Albinism Awareness Day, 13 June

We are delighted to mark international Albinism Awareness Day with our friends living with albinism both here and across the world and especially with Albinism Fellowship UK.

Find out more about the 2022 theme – United in making our voice heard on the United Nations website.

A young child sitting at a table drawing.

Nystagmus isn’t catching – tell your friends!

The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that nystagmus isn’t catching. She was worried that people wouldn’t want to be her friend.

She started to write a diary about her experiences at home and at school. Each diary entry began in the same way: “When I was a baby a doctor told my mum I was blind. I wasn’t blind, of course, but I did have nystagmus. Now I’m seven and I’ve still got nystagmus. This is how I see the world through wobbly eyes …” The diary was published in the Nystagmus Network newsletter, Focus.

That diary became the basis for the Nystagmus Network booklet for young children, ‘Wobbly Eyes’. This digital publication explains nystagmus in child-friendly language and gives children the words to talk about it themselves. It remains our most frequently downloaded information document.

Extract from the original diary published in FOCUS in September 1999

Yesterday at school some of the children in my class had to have a medical. They called my name out, so I had to go. First they tested our eyesight. I thought that was a bit silly, because they know I’ve got nystagmus. I could only see the big ‘H’ because the nurse was holding the chart too far away.

She asked me if I wore glasses and I said no. I was about to explain about my nystagmus, but she wasn’t listening. She just went on to the next person.

They gave me a letter to take home to my mum. She was cross, because the letter told her she had to take me to the optician straight away. I heard mum talking on the phone to the school nurse later on. She was still cross. She told them that Mr Calver* tests my eyes and that the school nurse doesn’t need to. I don’t think the school nurse really understands about nystagmus. But Mr Calver does, because he’s very clever.

*David Calver was at the time Consultant Paediatric Ophthalmologist at Guy’s and St Thomas’s Hospital.

Download your copy of Wobbly Eyes here

The front cover of the Nystagmus Network booklet for children, Wobbly Eyes
Two knitted nystagmus mascots wearing silver grey and purple clothes to mark the Platinum Jubilee, stand in a garden.

Join us for the big lunch

As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch.

Let’s all get together!

Whether you’re lunching at home in the garden, in your street or a local park, whether it’s a barbecue, a sharing platter or cucumber sandwiches and Jemma’s lovely Platinum Pudding, please share your photos with us and join the rest of the nystagmus community for lunch.

We’ll share your photos on our Facebook page to show that we all belong to the nystagmus community.

Find out more about the Platinum Jubilee here

Mascots available to order here

Gemma wearing the CROM and a clinical face mask.

Nystagmus Network funds research equipment

At the end of 2021 the Nystagmus Network invited funding applications from UK nystagmus researchers to cover the cost of equipment needed to take their work forward. This week work has begun at the University of Sheffield and Sheffield Hospital using newly funded equipment.

Orthoptist, Gemma Arblaster, from the University of Sheffield applied for a grant to purchase two different head position measuring devices. Her aim was to find a simple, accurate and clinically acceptable method of measuring head position and abnormal head postures in patients with nystagmus.

The Nystagmus Network was delighted to be able to fund the equipment, costing £549.25, thanks to the generosity of our supporters and fundraisers.

In patients with nystagmus head position is an important measurement, particularly during different tasks and different levels of visual demand. Currently in clinical practice Orthoptist or Ophthalmologist descriptions of head position and abnormal head postures are relied on. This method could be improved, and head position could be recorded and measured more accurately. 

The team at the University of Sheffield have been exploring methods of head position measurement, with an attempt to find a robust, but simple method of accurately measuring head position and head postures. Ideally this measurement would be simple to perform and non-invasive, but finding an accurate and remote method of measuring head position, suitable for clinical practice, has proved difficult. The gold standard Polhemus device was accurate, but impractical to use in a clinical setting. The depth camera (microsoft Kinect camera) was easier to use, but the data was less accurate than the Polhemus, particularly when less of the face was visible to the camera. The Kinect camera has also been commercially discontinued.

Gemma’s application was for two ‘low tech’ devices to measure head position to further both clinical and research interests in measuring head position and abnormal head postures in nystagmus. The cervical range of motion (CROM) is positioned on the head, but is considered accurate and fairly simple to use. The goniometer is an even simpler device that is placed near the head and does not need to be worn, however it can only measure in one plane at a time. Both devices offer potential to be used accurately to measure head position and abnormal head postures in patients with nystagmus, but further evidence is needed to explore their usability and support their accuracy.

Firstly, the devices will be used in the Orthoptic clinic at STH NHS FT to explore their ease of use and limitations in patients with nystagmus and abnormal head postures. Secondly, ethical approval will be gained for a research study comparing clinician descriptions of head position and abnormal head postures (current clinical practice) with measurements using the CROM and the goniometer in patients with nystagmus and abnormal head postures for other clinical reasons. The aim is to find out which method of measuring head position and abnormal head postures is the most simple and accurate in patients with nystagmus. This research will be published and the results disseminated. The plan is to apply for further funding to support research investigating and measuring head position and abnormal head posture measurement in nystagmus. This is particularly important for measuring the outcomes of interventions for nystagmus that are specifically targeted at improving head posture (such as surgery) and improving vision (such as medications).

Gemma currently has a clinical contract with STH NHS FT and a lecturer position at the University of Sheffield. This gives her a unique opportunity to undertake research in clinical populations and in student populations. The CROM and goniometer devices will be kept in the Orthoptic Department at STH NHS FT and used in patients with nystagmus for clinical and research purposes. Both devices will also be available to the University of Sheffield for undergraduate teaching and undergraduate research projects, which can only recruit participants from the volunteer student population.

This week, Gemma has begun work with the Nystagmus Network funded devices. She said:

“Thank you Nystagmus Network for funding our new head posture measuring equipment. I’m excited to start using it in the orthoptics clinic at Sheffield Hospital.”

The front cover of the Nystagmus Network annual report 2021.

We publish our Annual Report 2021

With two years of global pandemic behind us, the Nystagmus Network is still here, supporting the nystagmus community, thanks to the dedication of our valued supporters, fundraisers and members.

Thanks to you, in 2021 we
 

·       supported almost 600 people with enquiries, helping them to make sense of nystagmus

·        engaged with and provided information to over 13,000 people on social media

·        invested a further £17,320 in nystagmus research

Read the Annual Report 2021 here

People sitting together at a table enjoying breakfast.

Our ‘wonderful’ Landmark Trust weekend

Members of the Nystagmus Network acquired nystagmus and oscillopsia forum recently enjoyed a weekend away courtesy of the Landmark Trust ’50 for free’ programme.

The group stayed at the splendid Georgian property, Elton House, in the centre of Bath, where we enjoyed all the comforts of modern living and all the attractions of the city right on our doorstep.

A member of our group spoke for all of us when she said: “Our recent weekend in Bath was a wonderful experience and a chance for us to meet each other in person for the first time. It enabled people to be themselves without judgements being made about missed steps or where we sat in a restaurant. The group was such a success, you wouldn’t know we had only just met!”

Another group member said: “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much to the Landmark Trust.”

The picture shows group members enjoying brunch together at a local deli

A flyer including details of Symposium2022

#Symposium2022

Researchers, clinicians and students working in the field of nystagmus research are invited to attend this free international event, hosted by the Nystagmus Network on Friday 24 June 2022.

Abstracts submissions

If you would like to deliver a 15 minute presentation on your work in nystagmus, please submit an abstract. We welcome topics leading to the advancement of our understanding of nystagmus, including (but not limited to) diagnostics, genetics, treatments and therapies, management and support.

300 words max
no later than 30 April email: s[email protected]

Successful applicants will be required to deliver a 15 minute presentation of their work, in person or online, and be prepared to answer questions. Presentations should be in PowerPoint.

Registration

Delegates are invited to attend in person or online. There is no registration fee, but please note that you are required to cover all your own expenses if attending in person. Please register below. Thank you

Please note that this event is strictly for researchers, academics, clinicians and students in the field of nystagmus research only – thank you.

Register here for Symposium2022

A graphic of Mike dressed as the wiggly eyed warrior.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.

The logo of the Landmark Trust

Our Landmark weekend

This Friday to Monday Sue and members of the Nystagmus Network acquired nystagmus forum are spending time together in a beautiful, historic building, courtesy of the Landmark Trust. This is the first time everyone has met in person since they began getting to know each other online in March 2020. We look forward to getting better acquainted in relaxed and elegant surroundings.

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.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus at the beginning of the pandemic. 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 and 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].