Back in June, Jack and I went to our third Nystagmus Network Open day. This year it was in Leicester, and there was a great line up of sessions including a speech by Sarah Caffrey, a paralympian with nystagmus and achromatopsia.
Following our last post about Wilson using an I-Pad to help him at school, his Mum recommended more education resources on the RNIB (Royal National Institute for the Blind) website. We’ve been impressed by the up to date content across the site, and here are links we’ve found particularly useful/interesting so far …
We have recently had some great news about new baby Fletcher and Isaac …
At the Nystagmus Network Open Day, a speaker on genetics explained that with nystagmus the most common genetic pattern is X linked, but it can also be autosomal recessive or autosomal dominant. It made us curious to find out more about our situation and this post explains what we’ve learned …
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.
Next month I’ll be dressing up as a carrot and taking part in the Fight for Sight Carrots NightWalk.
Earlier this month Dad and I travelled to Leicester for eye appointments for Jack and Isaac spread over two days. The primary purpose was to take part in the OCT hand held scanner trial, but it was also to;
– Carry out VEP (visual evoked potential) and ERG (electro-retinogram) tests
– Carry out a visual acuity test to check whether Jack needs glasses
– Check whether Jack has Ocular Albinism
– Find out more about the chances of us/our children passing on nystagmus genes
– Check whether Isaac has nystagmus
We’ve read several posts by parents saying they’ve been advised the optimum age for performing surgery to correct nystagmus is before age two (primarily on the American Nystagmus Network e-mail discussion list and Facebook page). As Jack is 18 months there is only a six month window of opportunity for him, so we’ve sought advice from experts to check we are doing the best we can for his eyesight.
As yet, there is no cure for congenital nystagmus. But there are operations that can help slow it down and increase vision (by seeing more, faster, and having a wider field of sight). The null point can also be centred to prevent head turns and associated muscle strain.
Professor Irene Gottlob’s team at Leicester University hospital are one of the leading research centres for nystagmus in the UK. So when the Nystagmus Network recently publicised information about a new hand held OCT (Ocular Coherence Tomography) scanner they’ve helped purchase for Leicester and advertised for volunteers to take part in trials there I got in touch straight away. We are very keen to help out in any research that can help make a difference for the future.