Research by Leicester University shows that people with nystagmus find it more difficult to read numbers than letter and words. Speaking to an audience at Cardiff University’s School of Optometry, Leicester based researcher Dr Frank Proudlock said: “Reading numbers is a real problem for people with nystagmus. They do quite well with reading text, but really struggle with numbers.”
In a talk about albinism and nystagmus, Dr Proudlock also emphasised the value of hand-held OCT (Ocular Coherence Tomography) equipment for diagnosing both albinism and other causes of nystagmus in very young infants. Using OCT to study the development of the eye at such an early age holds out the hope of one day being able to intervene and reduce the impact of nystagmus, he added. “Hand-held OCT is a fantastic technique for infants with nystagmus. It can be used with premature babies and even in the operating theatre.”
Leicester is using eye movement recording equipment (eye trackers) as well as OCT for diagnosing nystagmus and predicting how the condition will affect infants when they are older. Although at an early stage, this work is already enabling ophthalmologists in Leicester to provide families with much more comprehensive information than most other hospitals in the UK or elsewhere.
However, the research in Leicester underlines how many unanswered questions remain about nystagmus. For instance, although researchers know the genes associated with albinism, “we still don’t know how they are linked to abnormalities in the visual pathway,” said Dr Proudlock.
The UK Nystagmus Network is funding a project in Leicester looking at the impact of nystagmus on balance. NN has funded other research in Leicester, including part funding the purchase of its hand-held OCT.
The Nystagmus Network has awarded a £10,000 “Wobbly Wednesday” research grant to Southampton University Hospital to develop a new test of what infants with nystagmus really see. The test will enable doctors to predict how a baby’s vision is likely to develop and therefore give parents better information about management and possible treatment.
Jay Self, Consultant Ophthalmologist, Southampton University Hospital, said: “I am delighted and very grateful to the NN for awarding this grant. It will help us answer one of the major questions about nystagmus: ‘Can we develop real-world tests of ‘vision’ for people with nystagmus that are better than a simple letter chart? By quantifying real-life visual problems for the first time, I believe we will show that us doctors routinely underestimate the visual problems faced by people with nystagmus. It will also help us prepare for clinical trials in the future.”
The £10,000 grant is part of NN’s £30,000 plus research funding programme for 2014. It is the first “Wobbly Wednesday” grant – an award funded by money raised in the UK from activities around the charity’s annual awareness raising day of the same name. This year Wobbly Wednesday fell on November 5th and involved people and nystagmus support groups in the UK, USA, Canada, Germany, India and South Africa.
Since 2012, NN has funded research in universities and hospitals in Cardiff, Leicester, London and Plymouth as well as Southampton. In 2013, the charity also funded its third international research workshop. NN will shortly invite applications for its 2015 grants programme and is holding its first clinical training day on January 30th.
Wobbly Wednesday, the second international nystagmus awareness day, inspired tens of thousands of people across the world, but also highlighted the challenges of this complex eye condition. Rhys in Australia tweeted “I love the term Wobbly, Some days are wobblier than others. Thank you for the affirmation of Wobbliness. I feel empowered.”
In the US, Apl.de.Ap, who has nystagmus and is a member of the band Black Eyes Peas, contributed to the flood of messages about Wobbly Wednesday on Twitter and elsewhere. The mother of an 11 year old in New York praised her son for making an announcement at school. “This bold confidence was unheard of in my brother's generation, much less my grandfather’s (who was made to wear a "dunce" cap). I am nervous and proud at how far we have come!”
In the UK, three year old George was one of many children who found the courage to tell classmates about his wobbly eyes -- then they all got to share some wobbly jelly. Jelly featured elsewhere too. Teacher Dan let kids in his school throw jelly at him to raise funds for the Nystagmus Network. For adults, Caroline mixed jelly and vodka – also to raise funds and awareness.
Sean wrote on Facebook: “24 years of my life I live with this eye condition. I've been bullied from my elementary days till my high school days and it’s really difficult for me to work properly. But still it’s not a hindrance for me to be loved and have a family.” In similar vein, Anna wrote: "I'm a professional cameraman & race bikes for fun. Don't let #nystagmus cramp your dreams.”
Determination will overcome many challenges, but not all and it’s important to remember that nystagmus affects people to different degrees. Caitlin told of how she can’t play tennis – the ball moves too fast and people with nystagmus need more time to see. Mike emphasised how nystagmus can vary throughout the day with a Tweet that “tiredness today means that even with my monocular I can see several hundred yards less than usual.”
Our patron, footballer Steven Reid, talked to his local radio station about his son’s nystagmus. NN development manager John Sanders was interviewed for two radio shows, while in north Wales Tracey gave what is probably the first ever radio interview about nystagmus in Welsh.
Hospitals and eye health professionals spread the word too. Liverpool Orthoptics Society made and sold cakes like eyeballs to raise awareness in the city centre. Orthoptists in Bournemouth, Oxford and many other hospitals put up fabulous displays and notice-boards to highlight nystagmus to patients and colleagues alike.
In the UK, many families took advantage of Wobbly Wednesday falling on Bonfire Night to hold fireworks parties to spread the wobbly word. Around the world, illuminating landmarks such as Niagara Falls, Blackpool Tower and the CN Tower in Toronto put nystagmus in the lime-light on a slightly bigger scale.
The impact of all this activity was colossal. In the UK our social media reach increased by over 200 per cent. Website hits approached 1,000. And India joined in the activity for the first time too, with an article about nystagmus in a newspaper in Goa and a letter to the Indian Prime Minister.
Whatever you did, thank you from the Nystagmus Network to everyone who took part. We’ll do it again next year, only bigger and better. We’ll leave the final word to a grandfather who tweeted: “if you don't know what #WobblyWednesday is my grandson could tell you, he has the condition.”
Wobbly Wednesday is international nystagmus awareness day. Across the world, children are telling their classmates what it’s like to have wobbly eyes. Our patron footballer Steven Reid, development manager John Sanders and many other are talking about nystagmus on the radio, in the press and on Twitter.
The aim is simple. Nystagmus is the most common serious visual impairment in children, but few have heard of it and little is known about the condition. So, the purpose of Wobbly Wednesday is to get across three simple messages:
During Wobbly Wednesday, hospital eye departments are explaining what nystagmus is and how it affects people. Schools are holding events to highlight the impact of nystagmus and what everyone can do to help a student with the condition. Firework parties, cake sales, a sponsored silence and countless other imaginative and fun events are happening throughout the UK. And people are joining us in India, South Africa, the UK, the USA, Canada, Spain and elsewhere.
Listen to seven year old Thomas Geering and mum Kathy talking about nystagmus on Eastbourne’s DGH Radio at https://soundcloud.com/radiodgh/john-sanderskathy-geeringthomas-geering-nystagmus.
Thomas and NN’s John Sanders explain what it’s like to have nystagmus and the importance of raising awareness of the condition through Wobbly Wednesday on November 5th.
Please support our work by texting WWNN14 to 70070 and the amount you wish to donate (eg £2 £5 £10) on or around Wobbly Wednesday. Funds raised enable us to support people with nystagmus, raise awareness and fund more research. We will be announcing the award of a £10,000 Wobbly Wednesday research grant very soon.
Blackpool tower (UK), Niagara Falls (USA/Canada) and the CN Tower in Toronto (Canada) are three landmarks lighting up on November 5th in recognition of Wobbly Wednesday – international nystagmus awareness day.
At least 1 in 1,000 people have nystagmus (around seven million worldwide) and awareness of the condition is growing fast since the first Wobbly Wednesday in November 2013. The new Facebook groups in India, Germany and Canada are just some of the signs that knowledge of nystagmus is increasing.
Wobbly Wednesday activities in the UK this year include bake sales, a lot of stuff with jelly and events in schools and hospitals from Guernsey to Scotland. Find out more at https://www.facebook.com/groups/WobblyWednesday/%20or http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday/365-wobbly-wednesday-2014-november-5th.
See the fun we had at the UK Nystagmus Network 2014 Open Day on our video at http://youtu.be/oRtcgICylak. The Leicester event in June brought together 150 people from across the UK – and a few from abroad. It is the one day of the year when those with nystagmus are likely to be in the majority.
We’ve been holding Open Days since the 1980s (in London, Birmingham, Manchester, Nottingham and Bristol so far), but this is the first time we’ve videoed one. It features paralympian Sarah Caffrey, researchers from Leicester and Cardiff, members of the NN team and of course lots of you.
Our annual Open Days give you the opportunity to talk to researchers and doctors, learn from experts in education and benefits as well as meet adults with nystagmus and other families who have children with the condition. We will announce details of our 2015 Open Day here, on Facebook and Twitter.
BIOS, the British and Irish Orthoptic Society, has given Level 1 CPD (continuing professional development) accreditation for the Nystagmus Network’s clinical training on January 30th in Bristol. The course will equip delegates to offer patients with nystagmus the most up-to-date service in terms of diagnosis, treatment, information and support.
Details of the event are at http://www.nystagmusnet.org/cms/index.php/about-us/clinical-training-day and an online booking option is available at http://www.eventbrite.co.uk/e/paediatric-nystagmus-a-practical-training-day-tickets-10486931695.
For the first time ever Nystagmus Network (NN) and our US colleagues the American Nystagmus Network (ANN) issue a joint news release to promote Wobbly Wednesday – Wednesday 5 November - a day dedicated to raising awareness of nystagmus.
Issued by both charities on the same day, “UK and US nystagmus charities unite for Wobbly Wednesday,” says that: “Supporters are planning to celebrate Wobbly Wednesday in many different ways but it is undoubtable the children who have wobbly eyes that will be the stars of the day”.
Chairman of NN in the UK Richard Wilson said: "The first Wobbly Wednesday was such a success that we just can't wait to do it all again. And it is just great that our American friends have taken this idea to their hearts too so that Wobbly Wednesday is truly global."
ANN president John Cramer said: “The American Nystagmus Network is pleased to once again partner with the Nystagmus Network in another Wobbly Wednesday. Last year, we were thrilled by the number of children that bravely went into their classrooms to explain to their classmates what it’s like to have Nystagmus.”
You can read the full news release online at: http://www.nystagmusnet.org/cms/index.php/about-us/mainsite-media/press-releases/382-uk-and-us-nystagmus-charities-unite-for-wobbly-wednesday