Zoe wears a care worker's uniform and a face mask pulled down under her chin for the photo.

Thank you, Zoe

It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people.

Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles every day with eye pain and headaches and trying to concentrate when her eyes wobble a lot, but she works hard and does an amazing job.

She sometimes feels alone, because she’s never met or spoken to anyone with the same condition. A lot of us can relate to that.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here


2 distance shields alongside 2 Nystagmus Network logos.

Please give me space

Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed.

Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have nystagmus it can be challenging to judge distances.

That’s why RNIB have worked with the Cabinet Office to develop a series of optional Please give me space badges you can print, wear or show on your phone. The idea is that people will immediately understand that you need space, but may find it difficult to maintain, so will help you by keeping their distance.

The logo of the 'please give me space' initiative - a yellow circle with a person in the centre, with two arrows pointing out to either side to indicate space and the words 'Be kind. Thank you for understanding.'

Find the badges on the government website here.

The Distance Aware initiative

Similarly, the new Distance Aware initiative is also welcome news. Using a series of distance ‘shields’, it enables individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme has recently been endorsed by the Department of Health and Social Care to promote the ongoing need for distancing. Also supported by the Welsh Government, the badge and poster templates are available to download here.

5 different distance aware shields. Each is a different colour with a chevronned border and in the centre a 2-way arrow indicating distance. Image includes logos of the Dept of Helath and Social Care, NHS Wales and the Welsh Government.

The Nystagmus Network hopes that the two schemes will help people living with nystagmus and low vision to stay safe, maintain their quality of life and continue to enjoy their independence.

Sara on the NHS front line

Sara works hard part time as Information Support Officer with the Nystagmus Network, but did you know she also works on the NHS front line? She’s even working today on her son’s birthday.

Her role is with a busy doctors’ practice. Sara says:

“I manage a team of 10 receptionists and support all the clinicians including GPs, nurses and pharmacists. My main responsibility during Covid-19 is first and foremost keeping our patients and staff safe.

‘We’ve had several members of staff needing to self isolate, so it’s a case of putting plans into place for the worst case scenario. To comply with social distancing we’ve had to rearrange the patient waiting area completely. Then there’s the difficulty of keeping staff 2 metres apart throughout the surgery.

‘Fortunately, our patients can message us by email, so saving them the need to come into the surgery. They can describe their symptoms or send us photos of something like a rash they may need help with. We can email sick notes and other documents. Our GPs are also conducting consultations by video call to protect patients and surgery staff.

‘Everyone at the surgery, including my reception team, is working very hard during a time when we’re under incredible pressure. We’re having to amend and update policies and procedures daily as the situation continues to change, but we’re an amazing team and I’m fortunate to be supported by a fantastic NHS work family!”

Well done, Sara. We know how much your GPs value you, especially as you’re their in-house nystagmus ‘expert’, too!

HAPPY BIRTHDAY, CHARLIE! Mum will be home in time for tea!

Happy Birthday, Nye!

On 15 November we mark the birthday of Nye Bevan, the founding father of the National Health Service, which marks its own 70th birthday this year. Although it is not clear how he acquired it and how it affected his life, Bevan is known to have experienced nystagmus.

Aneurin Bevan (15 November 1897 – 6 July 1960), more commonly known as Nye, was a Welsh Labour Party politician, serving as Minister of Health from 1945 to 1951. The son of a coal miner, Bevan himself began his working life down the mine, where, alongside his workmates, he experienced miners’ nystagmus. Bevan soon became politically active and was a lifelong champion of social justice, the rights of working people and democratic socialism. His most famous accomplishment was the establishment of the National Health Service, which was to provide medical care free at the point-of-need to everyone, regardless of wealth.

Picture courtesy of the BBC.