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Patient prospects improve - Focus


That’s the front page story of the March issue (106) of our Focus newsletter. The emphasis is on the word prospects. Research holds out the prospect of better and faster diagnosis before very long. Researchers are also devising tests to show how nystagmus really affects the way we see – rather than relying simply on visual acuity tests which have been shown to be inadequate for nystagmus.


Focus 106 also highlights the challenges eight year olds with nystagmus face, the perils of dating with wobbly eyes and a look back (but not necessarily in anger) on a life lived to the full with nystagmus. Our Focus newsletter is one of the benefits of NN membership. Four times a year we send members a print, electronic or audio copy of Focus.


Research & party to feature in Newcastle


This year’s NN Open Day in Newcastle on May 9 will see an update on research into how contact lenses might help people with nystagmus and open with a party the night before.




Consultant ophthalmologist Maria Theodorou, based in London’s Moorfields eye hospital, will present the findings of her research into the use of contact lenses by people with nystagmus. This £15,000 project was jointly funded by the Nystagmus Network and the Fight For Sight charity.




For information about Open Day go to http://www.eventbrite.co.uk/e/nystagmus-network-newcastle-open-day-2015-tickets-15275380073. To see a video of last year’s Open Day in Leicester, which attracted 150 people, go to  https://www.youtube.com/watch?v=oRtcgICylak&feature=youtu.be&a.




On the evening of Friday, May 8, local volunteers are organising a party in central Newcastle for anyone affected by nystagmus. The party is open to families and will include music, a guest appearance by Northwick -- the bear with nystagmus – and provide a great opportunity to meet others with nystagmus. For details, see https://www.facebook.com/events/793093747435590/?ref_dashboard_filter=upcoming and https://eventbrite.com/event/16270059185/?utm_source=eb_email&utm_medium=email&utm_campaign=new_event_email&utm_term=eventurl_text.


New website for Netherlands


The Netherlands has a new website (http://www.nystagmusinbeweging.nl/) and Facebook page (https://www.facebook.com/pages/Nystagmus-in-beweging/889889384396000) for people affected by nystagmus. Both were set up by Roelie van der Marel, an adult who has congenital nystagmus herself.




The Dutch activity is the latest in a steady expansion of support networks for people with nystagmus around the world. Other websites and Facebook pages and groups have recently been established in Brazil, France, Germany, India, Romania and South Africa among other countries.


Cardiff researchers want volunteers to time


MARCH 2015 -- With the help of funding from the UK Nystagmus Network, Cardiff University's Research Unit for Nystagmus is developing a new method for testing visual performance in infantile nystagmus. To help with this and another nystagmus project the Cardiff team is looking for volunteers (see below).




The Cardiff team have already shown that visual acuity (VA) is an inadequate measure of visual function in nystagmus because it does not address visual timing. This is the major aspect of this new test that the team is developing. Cardiff researcher Dr Matt Dunn explained: “We believe that better measures of the impact of nystagmus on vision will not only provide the means to demonstrate the effects of the condition to others, but will also improve our ability to assess new treatments.” An information sheet for this study can be downloaded from http://tinyurl.com/pjpm67e.




In addition, Cardiff is investigating the effect that nystagmus has on binocular vision. Through this project, they hope to better understand the high prevalence of strabismus and amblyopia (lazy eye) in individuals with infantile nystagmus. This project is funded by the College of Optometrists. An information sheet can be downloaded from http://tinyurl.com/nscohth.




To help with both of these research studies, Dr Dunn and his colleagues are looking for the help of around 20 people with early-onset nystagmus who are over the age of 18, and are able to travel to Cardiff. They can contribute up to £50 towards travel costs. Altogether, taking part in both studies should take around half a day and will include a full sight test by a qualified optometrist, who can provide you with an updated spectacle prescription.




The studies are split into two groups: the first involves reading letters that will be displayed for varying lengths of time on a monitor. The second involves looking between targets that will be presented on a big screen. For more information, or to volunteer to take part, please email Matt Dunn: This email address is being protected from spambots. You need JavaScript enabled to view it. .


A future vision of nystagmus and hospitals


“I have a dream” was how ophthalmologist Jay Self explained his vision of the future at the Nystagmus Network UK’s first clinical training day on January 30. Mr Self believes that within three or four years some babies will be able to have a genetic test to help quickly establish if any conditions are associated with their nystagmus. The benefits could include tailored medical care, less likelihood of invasive tests, less diagnostic anxiety for parents and more accurate genetic counselling.


Improving diagnosis


Other speakers suggested that some hospitals could already do more to establish the underlying causes of nystagmus. Traditional electrodiagnostic tests (such as ERGs and VEPs) should be carried out on most infants with nystagmus. Among other benefits, accurate diagnosis can help predict how nystagmus will affect a child – valuable information which can then be shared with teachers.


Leicester Royal Infirmary ophthalmologist Helena Lee explained the benefits of hand-held OCT (Optical Coherence Tomography) technology when investigating nystagmus in infants. Although not yet widely available elsewhere, the LRI’s hand-held OCT scanner is already leading to new discoveries about nystagmus and the development of the infant eye.




Mr Self said he offers most children with nystagmus a Certificate of Visual Impairment because it opens doors to other sources of help – especially from education services. Several QTVIs (qualified teachers of the visually impaired) among the 60 plus delegates confirmed that in their areas a child without a CVI was highly unlikely to get access to their service.


Treatment limitations


Dr Lee and colleague Rebecca McLean gave updates on nystagmus surgery (for the null point) and experimental drug therapies. Although drug trials suggest little benefit, Ms McLean highlighted the shortcomings of visual acuity as a measure for the effectiveness of any nystagmus treatment. Since nystagmus affects far more than distance vision, treatment outcomes should also look at factors such as time needed to see, scanning ability, possible improvements in depth perception or expanding the null point.


Frame foibles


Cardiff University researcher Maggie Woodhouse OBE explained the challenge the null point presents when fitting glasses to people with nystagmus. Although glasses do not fix nystagmus, many people with the condition need them because of long or short-sightedness. However, a head turn or tilt due to a null point often means the patient is not looking through the centre of the lens and may even find their vision blocked by the spectacle frame.


Social impact


In a separate presentation Ms McLean showed that nystagmus has far reaching social and emotional consequences too. Her research (see http://bjo.bmj.com/content/early/2012/04/18/bjophthalmol-2011-301183) found that people with nystagmus typically feel they stand out, have low self-confidence, feel pessimistic about their prospects and limited by not being to drive or travel independently. She told delegates that 10 of the 21 participants in her research cried while being interviewed.


Mental well-being


QTVIs and rehabilitation workers present confirmed that the mental and emotional well-being of children and adults who have nystagmus is an issue. One QTVI noted that mental health is a particular concern for teenagers and an almost completely neglected area.


A theme running throughout the day was how vital it is for families to receive information about the causes of nystagmus, its effects on daily life and the solutions available – not just medical solutions (which are anyway still very limited). In NN’s experience all parents have three basic questions: Why does my child have nystagmus? How will it affect my child? What can I/you/anyone else do to limit its impact? In most cases, getting answers to these questions brings considerable relief and benefit to parents.


NN heads north


NN’s 2015 Open Day is moving to Newcastle (UK) this year. The date is Saturday, May 9, and the place is the Centre for Life. This is your chance to meet others with nystagmus, talk to experts and find out what nystagmus means for education, employment and life in general.

Our keynote speaker is actor Gerard McDermott, who will explain how nystagmus has not held him back from a life in TV, radio and theatre. We’ll have the usual session for parents, an update on benefits and a crèche. Most people agree, though, that the best thing is simply being with 150 other people who know what nystagmus is. Not sure about taking the step? Watch the video of last year’s Open Day in Leicester at https://www.youtube.com/watch?v=oRtcgICylak&feature=youtu.be&a.


We move the event around the country every year so sooner or later most people can come along without having to travel too far. Recently we’ve held annual Open Days in Leicester, Bristol, Manchester, Birmingham and London. Book now at https://www.eventbrite.co.uk/e/nystagmus-network-newcastle-open-day-2015-tickets-15275380073

Training day attracts national interest


Eye health professionals from across the UK are heading to Bristol for a one day training course about paediatric nystagmus, on Friday, 30 January, 2015. The event, which is being organised by NN, will enable delegates to learn about the latest developments in diagnosis, genetics, treatment and management of patients with the complex eye condition nystagmus.


The training day is intended for ophthalmologists, orthoptists, electrophysiologists, ECLOs, hospital based optometrists and any other professionals interested in nystagmus. Speakers include ophthalmologists and other clinical staff from the University of Plymouth, the University of Southampton, Leicester Royal Infirmary, the Royal Eye Infirmary Plymouth and Cardiff University.


Paediatric nystagmus - a clinical training day - takes place in Bristol’s City Centre Marriott Hotel. The delegate fee is £50 including lunch and refreshments. This is a BIOS accredited training event. To find out more see http://www.nystagmusnet.org/cms/index.php/about-us/clinical-training-day.


Family foundation raises record £70,000 for nystagmus


The family, friends and colleagues of the late Giles Warman have raised £70,000 to support research into nystagmus and raise the profile of this poorly understood condition in conjunction with NN. £40,000 has already been allocated to genetic research by Southampton University. NN will use at least £10,000 to increase awareness of nystagmus.




The Giles Warman Foundation was set up by friends and family of City stockbroker Giles Warman who died suddenly in May 2013. The Foundation decided to raise funds in memory of Giles and support NN after his fourth grandson, Oscar, was born with nystagmus.




Oscar’s Mum, Hermione Warman, said: “As a mother there is nothing more devastating than being told that your perfect son has an incurable condition. I was distraught when, after being passed from doctor to doctor, we were told our gorgeous son Oscar had congenital idiopathic nystagmus and there was nothing we could do. My world felt like it was shattered, all the hopes and visions I had for Oscar’s future collapsed. Slowly, and following the wonderful conversations with the nystagmus network I realised we could get through this, and with positive action we can ensure that Oscar has the brilliant future we've always imagined for him.”




The Southampton research, led by Consultant Ophthalmologist Mr Jay Self, will result in a genetic diagnostic test enabling doctors to give a much faster and more detailed diagnosis than at present. The benefits include identification and treatment of associated disorders, the ability to tell parents how their child’s vision is likely to develop and improved genetic counselling for families about recurrence risk.