Eye Drops and Medication During Ramadan


During the Holy month of Ramadan, the Muslim community take part in fasting. This means that from sunrise to sunset, there is no eating or drinking (not even water). How does Ramadan affect eye medication? During Ramadan people often stop putting in eye drops (such as Glaucoma medication, antibiotic drops and lubricant drops) as it … Continue reading Eye Drops and Medication During Ramadan

Sue’s at VIEW


The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually. The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown. Sue’s virtual presentation on nystagmus in the classroom is exciting lots of … Continue reading Sue’s at VIEW

What is nystagmus?


For a back to basics, plain English guide to childhood nystagmus, visit the new Gene Vision website. The Nystagmus Network contributed to the content to make sure that people diagnosed with nystagmus, their families and the people who care for and support them would have a clear understanding of the condition. Visit the ‘nystagmus for … Continue reading What is nystagmus?

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia. Patsy’s story, a case study of AN and Oscillopsia Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the … Continue reading Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Notes from the February Forum for adults with congenital nystagmus


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus. ECLOs Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at ian.springett@nystagmusnet.org if … Continue reading Notes from the February Forum for adults with congenital nystagmus

Notes from the January forum for adults living with CN


It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!).  Here are just a few notes from our discussions. Jigsaws online There are lots of websites offering jigsaws to do onscreen. I tried TheJigsawPuzzles.com.You can change the background … Continue reading Notes from the January forum for adults living with CN

Notes from the January AN/Oscillopsia Forum


With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia. Symptoms It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far … Continue reading Notes from the January AN/Oscillopsia Forum

Notes from the January Parent Forum


The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling. It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s … Continue reading Notes from the January Parent Forum

Nystagmus Networking


With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can. Keeping you connected Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month. For parents There will be a virtual parents’ forum at 8pm on Tuesday 12 January. … Continue reading Nystagmus Networking

Thank you, Nadine


Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling. Most importantly of all, Nadine allowed us to let … Continue reading Thank you, Nadine