Notes from the Adults Living with Congenital Nystagmus Forum – September
Thank you to everyone who joined us for the Nystagmus Network September forum for adults living with congenital nystagmus. It was a lively and lengthy session this month with a whole raft of subjects covered.

Living Well with Sight Loss
One of our number is part way through one of the LWWSL courses by RNIB. These are freely available to everyone with impaired vision and designed to inform you about services available to you. Visit the RNIB website here for course dates.
Active Sussex are also running a 'living longer better' campaign based around sports.
Sun glasses

We explored tinted lenses versus dark sunglasses, Reactolite lenses and darkened contact lenses and shared experiences.

Tired eyes
Members of the group shared their thoughts on various computer screen adaptations and themes they had tried to combat screen fatigue, particularly in the workplace. The conclusion was that it's a very personal thing and there's no one size fits all when it comes to nystagmus.

Out and about
After 18 months of staying largely at home, some people are feeling a little less confident about travelling again. It was agreed that talking buses and bus stops, where available, were a boon as is the colour coding on the London Underground. There have been both good and not so good experiences of asking fellow passengers for help and booking travel assistance on the railway.

People with nystagmus are bright!
You heard it here first, but there was general agreement that people with nystagmus have to have a lot of resilience, be assertive and questioning and have excellent memories. If this means they also come across as very bright, so much the better!

Thank you to those of you who came along to virtual Open Day on Saturday 25 September. If you didn't manage to join us for the live sessions on the day you can still enjoy the pre-recorded presentations using the links in your digital programme. If you don't have a programme and would like one, please email us at

See you later in October.
Best wishes


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