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Oldest known books on nystagmus available online

 

A French supporter of the Nystagmus Network has tracked down the earliest known publications about nystagmus. The two books -- one in German and the other in French – were published in 1857 and 1869 respectively and are available to read online.

 

The German book entitled “Der Nystagmus und dessen Heilung" (Nystagmus and its treatment) by Dr Ludwig Boehm is available at http://reader.digitale-sammlungen.de/de/fs1/object/display/bsb10390716_00005.html. The 170 page long book discusses the use of muscle exercises, surgery and glasses to treat nystagmus. It concludes with a number of case studies

 

The French book, “Etude sur le Nystagmus” (A study of nystagmus) was published 12 years later in 1869 by Dr A-E Gadaud in France. Gadaud writes that nystagmus is among the least studied eye diseases – something that has changed little in 150 years.

 

In his book (see http://gallica.bnf.fr/ark:/12148/bpt6k5470106q), Gadaud notes that some disagree with Boehm’s view that nystagmus was simply a problem of the eyes. We now know that nystagmus is much more complicated than that – as many of his contemporaries already suspected in the mid 19th century. Gadaud’s book also casts doubt on Boehm’s claims to have cured several cases of nystagmus.

More than 150 years later many unanswered questions remain about nystagmus. For a more up-to-date scientific and medical book on the condition see the “The Challenge of Nystagmus” available at http://www.nystagmusnet.org/cms/index.php/shop-home/books and on Amazon at http://www.amazon.co.uk/The-Challenge-Nystagmus-Proceedings-September/dp/0955894026/ref=sr_1_1?ie=UTF8&qid=1407941438&sr=8-1&keywords=challenge+of+nystagmus.

NN invites grant applications

 

Having just awarded a £15k research grant to Cardiff University, NN is offering a further £20k plus for research projects this year in three separate programmes.

 

To apply for our £10,000 grant – deadline end of August -- please email This email address is being protected from spambots. You need JavaScript enabled to view it. . Similarly email John for details of our small grant scheme -- a total of £5,000 available in sums of up to £1500.

 

The final application date for our joint £15k grant with Fight For Sight is August 27th. Download an application form at http://fightforsight.org.uk/funding-types/articles/small-grant-awards-schemes

 

Research into all aspects of nystagmus – prevention, cure, treatment and impact is a core NN aim alongside providing support and raising awareness.

 

Cardiff to use £15k NN grant to assess impact of nystagmus

 

Cardiff University’s Research Unit for Nystagmus (RUN) is to use a £15,000 grant from NN to develop a test to accurately measure the impact of nystagmus. The award is the first in a new annual scheme from the charity. NN is calling for applications for another research grant (£10k) to be announced later in the year

 

 

 

The Cardiff team has recently published evidence (http://abstracts.iovs.org/cgi/content/abstract/54/6/179) that visual acuity is an inappropriate measure of visual function in nystagmus. The test, designed by Dr Matt Dunn and director of RUN Professor Jonathan T. Erichsen, will allow for ‘time to see’ and the null zone to be taken into consideration when assessing the effects of nystagmus (involuntary eye movements).

 

 

 

Dr Dunn said: “Recent work from our lab suggests that visual acuity may not be a relevant measure when assessing changes in visual performance in people with nystagmus. We are therefore very grateful to Nystagmus Network for providing this funding which will enable us to investigate the nature of visual 'timing' in infantile nystagmus. This may provide a method for more accurately measuring visual experience and assessing the effectiveness of currently available as well as future treatments.”

 

 

 

NN honorary president Vivien Jones said: “The proposal will potentially have a significant impact on the research community by providing an important new tool to measure existing and new treatments. This will also provide benefit to those with nystagmus who clearly want to know whether existing or new treatments do lead to improvements in vision.”

 

 

NN has set aside over £40K for research funding in 2014. 

Football and picnic in the park

Several young people with nystagmus brought their families along for a picnic and a game of football in a park in Leicester at the end of July. Everyone had a great time and – as you can see from the photo – wobbly eyes don’t necessarily stop you kicking a ball around.

If you want to meet others with nystagmus, take part in or organise a social event go to our Facebook page https://www.facebook.com/pages/Nystagmus-Network/216838805015328

Hindi information sheet added

 

Supporters in India have translated NN’s basic information sheet on nystagmus into Hindi. The Hindi fact sheet is available as a free PDF at http://www.nystagmusnet.org/cms/index.php/nystagmus along with other languages including Telugu, French, Spanish, Italian and an updated German information sheet.

 

 

 

India has a new but already thriving nystagmus facebook page at https://www.facebook.com/groups/257947687740850/. Discussion topics include the shortcomings of visual acuity as a measure for nystagmus, what ophthalmologists should tell people when giving a diagnosis of nystagmus and how to improve education support for children in school.

 

Smiley faces say it all

 

Our Leicester Open Day was a lot of fun, as a glance at the photos in our July newsletter shows. The fun continues in Disneyland and advice on how to get the best from this attraction if you have a child with nystagmus. Focus 103 has hard stuff too. Ironman Neil has never let nystagmus stop him – or slow him down when it comes to marathons, cycling and triathlons. Jo writes about acquired nystagmus and how there’s no need to despair. Parents Martin and Paula write about their son Oliver’s experience of nystagmus and their own journey through the diagnosis system. And the latest adventure of Frank and Northwick the bear uncovers a little known fact about nystagmus. Focus is sent to all members of the Nystagmus Network and is available in print, pdf and on audio CD.

 

Health Visitors add nystagmus advice

 

The UK Institute of Health Visiting (IHV) has added a nystagmus information sheet to its website at http://www.ihv.org.uk/uploads/32%20GPP_Nystagmus_V4.pdf. Health visitors potentially have an important role to play in identifying early onset nystagmus which often only becomes apparent at around 6-8 weeks of age.

The information sheet describes nystagmus as “complex because it doesn’t simply affect distance vision but also response times, field of vision, depth perception and ability to scan. The condition can also manifest itself in different ways throughout the day. As a condition it is similar to Cortical Visual Impairment (CVI).”

 

The IHV information sheet was written in cooperation with the UK Nystagmus Network.

 

India starts nystagmus facebook page

 

With the help of the UK Nystagmus Network and others, several people in India have got together to set up their own facebook page at https://www.facebook.com/groups/257947687740850/. The launch follows encouragement from NN after the UK charity noticed that people in India are the fourth biggest group of visitors to its own facebook page.

 

 

 

NN development manager John Sanders said: “It's great to see a nystagmus Facebook page for India. The Nystagmus Network has existed in the UK for over 30 years, so we know the value of helping each other. We also do a lot to raise awareness and encourage and fund research into nystagmus. Hopefully you will all be pleasantly surprised at how much you can achieve by working together in India.”

 

The USA and Australia – the second and third biggest sources of visitors to NN UK’s facebook page -- already have their own national facebook pages. The US also has its own non-profit organisation helping people with nystagmus – the American Nystagmus Network (ANN).

 

Speaker Sarah inspires

 

Paralympian Sarah Caffrey inspired the 150 delegates at the NN Open Day on June 28th with her account of succeeding in sport and work despite having nystagmus and achromatopsia. Her talk was particularly helpful for parents of children with nystagmus who are uncertain of what the future holds. Several parents described Sarah’s talk as brilliant and inspirational.

 

 

 

Sarah was the keynote speaker at this year’s Open Day, which took place in Leicester, a leading research centre for nystagmus. Sarah spoke frankly about the traumas and challenges she sometimes experienced at school, university and in her working life because of her visual impairment. But she balanced this with stories of her successes and the very positive support she receives from friends, family, colleagues and fellow athletes.

 

 

 

Sarah rowed for Ireland in the 2012 paralympics and has won silver and bronze medals in international events. Yet at school she dreaded PE days, mainly because no-one understood how hard it is for people with nystagmus to play ball games. Luckily at the age of 14 Sarah discovered rowing and has never looked back since. She scuba dives, cycles, sails, skis, surfs and white water rafts among other activities and adventures.

 

 

 

Sarah also has a successful career as a qualified teacher of the visually impaired (QTVI). She says that being visually impaired herself is an advantage as it gives her greater awareness, understanding and empathy with students and their parents.

 

 

 

However, Sarah admits that life with a visual impairment is not always plain sailing. It wasn’t until she was in her 30s that she fully accepted her vision and its limitations. And like many with nystagmus, she says that getting people to understand what she can and can’t see remains a challenge. “Some people treat you as totally blind, while others think you’re pretending,” she says.

 

Bonding in Bromley

 

Around 30 parents, teachers and teaching assistants met in Bromley on June 11th to learn and talk about nystagmus with NN development manager John Sanders. One of the biggest challenges they identified for children was getting across the message that nystagmus does affect sight beyond simply reducing distance vision. That’s because many children with nystagmus appear to cope so well, when in fact they are bluffing about what they can (or cannot) see and trying desperately not to draw attention to themselves.

 

Technology like interactive smart-boards, tablet computers and Kindles are a great help to children with nystagmus. But all agreed that technology doesn’t solve everything. Parents and teachers noted, for instance, the social challenges children with nystagmus face such as finding their friends in the playground, failing to see visual cues and the feeling of sometimes being left out.

 

One frustration that many parents (and qualified teachers of the visually impaired or QTVIs) have is the lack of understanding that glasses don’t fix nystagmus. They also highlighted the difficulty people with nystagmus have in busy, fast-moving environments and with seeing fast movement in general.

 

If you would like a talk or training session about nystagmus, please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

Send us your questions

At our annual Open day every year, we invite you to put questions about nystagmus to experts. Your questions can be about any aspect of nystagmus – medical, scientific, education, work, social, etc. Even if you can’t make it to Leicester on June 28th, you can email us your questions and we will get answers to as many as we can.

For more information about this year’s Nystagmus Network Open Day see https://www.eventbrite.co.uk/e/nystagmus-network-open-day-2014-tickets-10371729121

To see examples of the questions we would like answered, go to http://www.nystagmusnet.org/cms/index.php/research