On Saturday 20th October I went to my second Nystagmus Network Open Day which was held in Manchester this year. The purpose of the event is so people can meet and share experiences. It’s also a great opportunity to find out more about current research and ask questions to medical experts.
This year Vivian Jones, the lady who founded the charity in 1984 after her son was diagnosed the year before, was there. It’s difficult to imagine life before the internet, and I feel lucky we’ve had access to the Nystagmus Network team and resources.
As last year, I’ve noted some of the key points and new information I’ve learned.
Session for Parents
The majority of people with nystagmus are unable to see their eyes move when they look in a mirror as the brain compensates for the movement. To see your eyes move try videoing yourself and watching it back.
A man with congenital nystagmus confirmed he sees everything still, with the exception of his LED alarm clock lights in a dark room which appear to move.
Good ideas for stimulating your children’s eyes are putting high contrast pictures/lights on ceilings, and/or putting up a disco ball. Encourage them to look at high contrast objects at different distances to work the eye muscles.
A child with nystagmus should be referred to an Ophthalmologist (usually a paediatric Ophthalmologist who specialises in working with children with eye conditions) and have a minimum of one appointment per year. They should not be discharged or referred to a regular Optician as they may lack the specialist knowledge required to treat your child.
Doctors may be reluctant or refuse to refer to you to a Specialist out of your area (e.g. if you’d like to help take part in research) as it costs them money, but you are entitled to this on the NHS (National Health Service). There is a service called PALS (Patient Advisory Liaison Service) who can help resolve any concerns or problems you have with referrals or the NHS in general.
For children with albinism (where the eyes/skin lack pigment), it’s possible to get suncream that rolls on like a deodorant. E.g. SunSense
Parents were keen to learn more about what support they are entitled to for their children at school. Some support parents are currently receiving for their children include;
– A Vision Impaired Teacher to copy and enlarge textbooks
– Monocular (similar to a small telescope)
– Magnifying glasses – see the RNIB information about different types and which you may need
– Use of an Acrobat Reader in the classroom which magnifies anything placed under it
– Spot on the carpet specially for to your child (to take account of their null point)
– Support to get to their lunch table and back
– Angled stand to help make reading and writing easier
Meetings with schools about your child’s education can be difficult and emotional, no matter how much you prepare in advance. RNIB have Eye Clinic Liaison Officers who may be able to provide advice and support before and at your meetings. There may be other local vision related charities who can help with this too.
Several parents commented it’s been more difficult to secure support at secondary school (than primary school) as not only are there more teachers, but also because their children have started to feel more self concious and haven’t wanted to stand out from others. Parents feel frustrated that they’ve tried to secure the best support and their children have or are pushing it away. If anyone has any advice about this we’d welcome hearing what’s worked well for you.
There is a big difference between “your child is coping fine” and “your child is achieving their full potential”. Support levels vary widely so you should learn what your child is entitled to and fight for it. Nystagmus Network are here to help you with this.
Larger employers often offer more support to people with a visual impairment.
Smaller employers should be made aware that there is not always a cost involved in purchasing equipment as funding can often be sourced elsewhere.
Georgina Hall, a Consultant Genetic Counsellor at St Mary’s Hospital in Manchester held an informative session on genetics. She explained with nystagmus the most common genetic pattern is X linked, but it can also be autosomal dominant or autosomal recessive. I will write a separate post to explain this in more detail.
Researchers from specialist Nystagmus units at Leicester, Cardiff and London gave an update on their current work including;
Leicester are continuing a trial of drugs to help dampen eye movements and improve vision. Sixty six people are currently taking part with two different drugs and a placebo. Initial results show the drugs work, but there are differences in how effective they are. Waveform analysis has shown those with pendular nysagmus respond better than those with jerk nystagmus. They are now testing the longer term effect of the drugs over an 18 month period.
Leicester are carrying out an audit of how successful tenotomy operations (used in the USA) are to see whether this is something they may do in future. Tenotomy involves cutting the four eye muscles and re-attaching them in the same position to slacken them which has been proven to slow nystagmus in dogs and humans. The proceedure is included within current operations to shift a null point, but this may prove useful for patients who have a fairly central null point.
Leicester are also continuing work on refractive corrections (hard and soft contact lenses), quality of life, and imaging (using their new hand held Optical Coherance Tomography scanner).
Cambridge are using eye movement recordings to test for areas of the brain that generate nystagmus. They are also measuring reaction speeds and have found that flashes of light can change the speed of nystagmus.
London are investigating a way of testing the vision of people with nystagmus, as the standard visual acuity tests do not take into account changes in eye movements.
London are hoping to promote the use of Sim Specs which can be worn to simulate how well a visiually impaired child is likely to be able to see.
The Nystagmus Network have recently launched a book called The Challenge of Nystagmus based on the proceedings of the Nystagmus Network International Research Workshop they hosted in September 2009. It’s a scientific and medical book aimed at professionals but they plan to summarise the key findings for members within their forthcoming quarterly newsletters too.
At the start of the meeting I chatted to a middle aged couple both with a vision impairment. They met at school, and have managed well together until recently when the lady who has congential nystagmus said the movement has got worse and she cannot see as well. She said she’d never met anyone else with nystagmus before and was looking forward to the day. At the end I bumped into them again and they were pleased they had come. The lady said she’d spoken to one of the research teams and has been accepted to take part in a research trial to help improve her nysagmus.
Mid morning I sat with a French lady with nystagmus who’d travelled to Manchester for the Open Day by herself. She said there is nothing similar to the Nystagmus Network in France, and she’s glad to have the opportunity to come to this Open Day as it’s difficult for her to find out about current research in her country.
At the start of lunch I bumped into the first lady I chatted to at last year’s Open Day. It was great to see her again. This year she’d brought her daughter with her who has nystagmus, and is currently studying to be a Doctor. I asked how the nystagmus impacts her and she said the main thing she’s aware of is her lack of 3D vision/depth perception. She said when she gets her eyes checked she’s unable to see the images on the cards to test for it. However, she said she’s usually ok with steps and kerbs. Whilst studying she said she struggles counting small things under a microscope but her friends do too. She also said she cannot always see when drivers wave her across the road, but I suggested that at least she won’t be able to see their “cross face” if they think she has ignored them!
For the afternoon I was sat with other parents of children with nystagmus, including some I’d met at the Carrots NightWalk. It is an amazing feeling to be around others who have been through similar experiences.
I found out we exceeded our £7,500 fundraising target for the Carrots NightWalk and secured the additional £7,500 match funding from Fight for Sight – well done carrots
Nystagmus Network proudly launched their new website at the Open Day. It includes a new ‘Members only’ section with back copies of the quarterly Focus magazine, research updates, and downloadable guides about different topics such as driving.
These notes report only a fraction of what was covered on the day. I highly recommend attending an Open Day as they are well organised and a great experience.