Nystagmus.co.uk - Real Life Experiences

nystagmus.co.uk - a website packed with information about nystagmus; including personal experiences (of a teenager/child), facts and the scientific details about nystagmus. The website is designed for parents, friends, family and teachers who are interested in finding out about nystagmus. It is my hope that you will have a much better understanding of nystagmus once you have browsed the website.

Hi, I am James and I suffer from nystagmus like thousands of other people. I am currently at university studying for a maths degree, and am in my first year. Nystagmus affects me all the time, but I am fortunate because my nystagmus is not as severe as some. I was diagnosed with nystagmus before I was a year old, and my parents never understood how it affected me until I was old enough to describe what I saw.

I decided that I would build a website and document some of my experiences of nystagmus and any information I can find on the subject. It is my hope that I can enlighten parents, friends and teachers of other children as to how nystagmus affects the life of sufferers.

I hope that you will find this information and my experiences very interesting to read and that they help you to advance your own understanding of nystagmus. Whether you are a child or adult that has nystagmus, a parent, teacher, or friend of someone who suffers from nystagmus, you will be able to increase your knowledge and hopefully understanding of the problems that sufferers face.

The website is now thriving and is undergoing a revamp, which will hopefully improve the website and make you feel confident in navigating it.

I am currently at high school and I have started the second of two years studying for my A levels. I am studying Mathematics, Further Mathematics, Physics and Computing. I have nystagmus and have had it since I was born, so I know no different. I have found it difficult throughout my life so far, however I have got used to it and I have overcome most problems that have been presented. I have found it hard to make friends because they have not understood my situation and I have had to work hard at school to try and make my teachers understand.

However, I would just like to make it clear that I have found ways around all the problems that have occurred at school, and as a result this disability does not seem to affect me much; I am currently achieving mostly 'A's and 'B's in all my subjects.

I thought I would write about some of my experiences and provide information for those who are interested in learning about nystagmus. I feel there is a lack of information about the subject and I felt that others wondering about nystagmus may find my own experiences valuable. My parents said that they never really knew what it was like for me until I was old enough to describe it to them. It would have been helpful if my parents were able to understand my problems better, when I was younger, e.g. when trying to ride a bike. Parents may therefore find my information and experiences helpful and enable them to understand a child with nystagmus and to plan for the future.

I feel that children with nystagmus may find this interesting and they may be able to get in contact with others who suffer from nystagmus. Teachers may even wish to find out more information about nystagmus and read about my own experiences at school, in order to make education more accessible to their pupils.

For whatever reason you are looking at this site, I hope you get all the information you want from it.

The Ophthalmology team at the University of Leicester has a major interest in Nystagmus and research into Nystagmus. The team is headed up by Professor Irene Gottlob who is also medical advisor for the Nystagmus Network, UK. The two major research projects are:

If you want more information, please email Rebecca McLean rjm19@le.ac.uk or phone 0116 258 6290.