People often label early onset nystagmus as an intractable, incurable eye problem, or worse still dismiss it as a symptom of other conditions such as albinism.
Nystagmus is an involuntary movement of the eyes which often seriously reduces vision. Few people with nystagmus can drive and most encounter some difficulties in everyday life, education and employment. People often label early onset nystagmus as an intractable, incurable eye problem, or worse still dismiss it as a symptom of other conditions such as albinism. The UK patient support group and charity the Nystagmus Network (NN) challenges the view that nothing can be done about nystagmus by supporting research into the condition (see http://www.nystagmusnet.org/)
In 2009 NN organised the Second International Nystagmus Research Workshop and in September this year NN will publish “The Challenge of Nystagmus: Proceedings of the Nystagmus Network Research Workshop, Abingdon, UK, 2-5 September 2009.” This is the first scientific book dedicated solely to nystagmus and will be essential reading for anyone with an interest in nystagmus – whether clinical or research.
The 24 chapters are written by some of the leading experts on nystagmus in Europe, the USA and Australia. The editors are ophthalmologist Professor Irene Gottlob of Leicester University, neuroscientist Professor Chris Harris of the University of Plymouth and John Sanders, Information and Development Manager at the Nystagmus Network.
The 24 chapters (over 120,000 words and more than 120 figures) will bring the reader up to date on current nystagmus research, treatment and management options. They cover mechanisms, waveforms, measurement, genetics, pharmacology, surgery, perception and the management of nystagmus.
The book shows that early onset nystagmus is a developmental condition. It also shows that considerable progress has been made in understanding and diagnosing nystagmus in the past 20 years. Yet key questions remain to be answered and work to be done to ensure that all patients – not just those seeing the handful of nystagmus experts in the world -- benefit from current best management of the condition.
“The Challenge of Nystagmus” will be available direct from the Nystagmus Network at a cost of £45 (details will appear on the NN website www.nystagmusnet.org later this year). In addition to the printed version, NN will offer a pdf version of the book to its members at a lower price. This reflects the growing interest among people affected by nystagmus in the science behind the condition, while acknowledging that this is first and foremost a book aimed at professionals.
For further information please contact: john.sanders[at]nystagmusnet.org