Oct 142014

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. 

What I enjoy most about the day is the atmosphere and the people.  Everyone there either has nystagmus, knows someone with nystagmus, or wants to learn more about it.  I feel comfortable talking to anyone I meet.  Each year I feel happy to be there, and also emotional.  Everyone understands.

In this post I’ve explained some of my experiences, and some of the new things I’ve learned.


Jack and I travelled down the day before by train for our six monthly OCT (Ocular Coherence Tomography) scanner trial appointment at Leicester University hospital, and stayed overnight in the city centre.  The following morning we bumped into Naiomi and Alan and their two guide dogs in the lift.  I asked if they were going to the open day, and they said yes so we walked along together.  Jack is sometimes scared of dogs as he’s been licked many a time, but he got on really well with these two and was very impressed at their crossing the road skills!

At signing in (and again in the education session) I bumped into a lady we’d met at Leicester University hospital six months ago.   Her son is a couple of years older than Jack and is taking part in the OCT scanner trial too.

Throughout the day there were plenty of opportunities to chat to others, but one that I’ll not forget is when everyone (150+) was asked to get into a big circle in birthday order.  Fantastic!

In the queue for lunch I chatted to a young couple who were at the event for the first time.  The man had nystagmus and was a working musician.

During the afternoon, I sat at a table with a family of four from Australia.  Their son has nystagmus.  The Dutch husband and Australian wife got together after they met on holiday in New Zealand.  Their son had a tenotomy (where eye muscles are cut and re-attached with the aim of dampening the nystagmus) as part of a squint operation when he was one year old.  The family came especially to learn more about nystagmus and were really pleased to be there.  In the session dedicated to Wobbly Wednesday their son and daughter suggested lots of ideas they’d like to try including doing rides in a shopping trolley and selling lemonade.

Throughout the day I was also very pleased to get to say hello to people in the Nystagmus Network and Leicester hospital teams who work exceptionally hard for all of us.

Paralympian session with Sarah Caffrey

I was truly inspired by this woman.  Sarah was born with achromatopsia (non progressive hereditary visual disorder characterised by decreased vision, light sensitivity, and colour blindness – affects one in 33,000) and nystagmus.  She competed in the 2012 Paralympic games in rowing for Ireland and is currently working as a teacher.  She gave a talk about her condition and how it affects her.   It was a refreshingly honest speech.   She said the teen years were hard and she avoided using visual aids such as monoculars at school – she didn’t like standing out from others.  But the overall message was that she now feels incredibly proud of who she is and what she has achieved.

I particularly loved the humour in the speech – including not realising she’d worn bright red boots for an interview, and about crashing on a hen do driving experience after she’d explained her sight issues but been allowed to take the wheel anyway!

It covered the day to day realities of living with a visual impairment and light sensitivity, such as turning to face away from the sun during conversations, making sure there are always spare sunglasses to hand, choosing night activities over day time where possible etc.

It was reassuring to learn that despite her condition, it had never stopped her achieving what she set out to.  And she mentioned that a life changing “road to acceptance” event for her was taking an activity holiday with other Visually Impaired people in her early 20’s.   It’s important to appreciate everything you have compared to so many others.


Education session

This session was led by Sam Jones (son of Vivien, President and founder of Nystagmus Network) who is the Volunteer Educational Advocate for Nystagmus Network.

He went into detail about different types of support available, and a process that’s in place to help if you encounter problems getting the help you need.  He explained about the Education Act of 1996 being updated by the Children and Family’s Act in September 2014, and the change from current “Statements” of SEN (Special Education Needs) to new EHC (Education Health and Care) Plans.

He also explained how School Action and School Action Plus are being replaced by SEN (Special Education Needs) Support.  SEN Support is for help that will be received at school (e.g. a special learning programme, extra time from a teacher or assistant etc.), whereas EHC plans are used where needs are more complex and support is required outside of school too.

The following RNIB page has great advice for Getting the right support – Sen and inclusion.

Within the group, parents described good and bad experiences.  What is clear is that we need to be continually proactive in seeking out the best help for our children.  Some good ideas that came up included :-

  • Before your child starts nursery, get in touch with your local council and ask to speak to the Vision Impairment team.  They will have trained staff who can assess your child, advise you, and make visits to nurseries and schools to help educate teachers.
  • Choose your nursery/school carefully – pay a visit, ask about experiences with visual impairment/special needs etc.
  • Make an effort to get to know Teachers, QTVIs (Qualified Teachers of the Visually Impaired), SENCOs (Special Educational Need Co-ordinator) and anyone else who will have an impact on your child’s development.
  • Know your rights, and if you have any concerns these are not being met then speak up straight away – you cannot get any lost time back.


Research session

One of the main challenges for nystagmus research is that the measure for success is usually “has visual acuity improved” (e.g. can people see more on an eye chart).  It is very difficult to secure funding where there are no tangible benefits.  Positive opinions alone are deemed as subjective as they are hard to prove.  The Cardiff “RUN” team are currently researching better ways to measure nystagmus treatments, and Leicester continue to work on a Quality of Life survey which looks into factors such as relationships, standing out/being different, and feelings about the inner self.

This year Leicester have introduced Eyelink 1000 Eye Movement Recording tests for children at their clinic.  It’s a simple test that takes less than five minutes.  It involves looking at a screen with various cartoons whilst a camera records the eye movements.  No wires!  The technology was originally developed for advertising purposes to track where people look on a screen whilst the adverts are on.  The tests can be used to take baseline measurements and track eye development over time.  They can also help determine the underlying cause of nystagmus and position of null points.

Research has shown that two drugs called Gabapentin and Memantine can potentially improve visual acuity by up to 1.5 lines on an eye chart for those with certain types of nystagmus.  More follow up studies are being done.

Leicester are continuing a research study into tenotomy (to see whether cutting and re-attaching eye muscles has an impact on dampening the nystagmus) to compare results with others that have been published.  The sample is 20 adults, of which 12 have taken part.  Results will be published after a five year period.

It is possible for people to have more than one null point e.g. if one null is way off centre, they may only choose to use it in extremely demanding situations, and adopt a second, more convenient one for general use.



Please note, my words above are a brief insight to some of what was covered on the day – there was much more.  My advice is to attend a future event if you can.  It really is a great, well organised and informative day





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