Nystagmus Patient Information Day


The Nystagmus Network is delighted to be supporting a Nystagmus Patient Information Day, running at Moorfields, London on Saturday 24 November. Moorfields Eye Hospital is holding an information day for adults with nystagmus since childhood. The day will allow you the opportunity to directly influence the patient pathway from diagnosis to treatment and the support … Continue reading Nystagmus Patient Information Day

Little Amber – there to help


Nystagmus Network’s Rachel, writes: Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently our Education Advocate, Frances, came across a charity awarding grants to blind and partially sighted children for music lessons. The Amber Trust offers grants for singing or instrumental lessons, music therapy and concert tickets to children … Continue reading Little Amber – there to help

Guest post: Harry’s back at school!


Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation. Ian writes: “Harry’s eyes are now nothing but a slight irritation and, apart from … Continue reading Guest post: Harry’s back at school!

Try VR at Open Day


The Nystagmus Network is currently funding pioneering research at the University of Sheffield which could really help improve the quality of life of people who acquire nystagmus in adulthood. Acquired Nystagmus is usually accompanied by oscillopsia, which means that the subject sees a moving image rather than a stable one. This is a particularly disorientating and … Continue reading Try VR at Open Day

Children’s health: why vision matters


When an infant is diagnosed with nystagmus, it’s very important to ensure that the child continues to have regular sight tests and check ups to make sure that other problems with the vision are identified and treated. That’s the message coming loud and clear from a recent report by the UK Vision Strategy team. As … Continue reading Children’s health: why vision matters

Guest post – Harry’s recovery from surgery continues


Harry and his family continue their post surgery journey. Ian writes: On day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision is settling down and he is able to see much better. He is still having to have eye drops 4 times a day for the … Continue reading Guest post – Harry’s recovery from surgery continues

Guest post – one week after Harry’s null point surgery


Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation it was time for father and son to have a chat about how things had gone. Ian continues: On the Sunday post operation I had … Continue reading Guest post – one week after Harry’s null point surgery

Guest post – Harry’s null point surgery


Ian is sharing his thoughts and experiences as his son undergoes Anderson Kestenbaum surgery this summer to address the head turn associated with his null point. In this post he recalls the day of the surgery: We had to be there at 8.00am and Harry was in really good spirits. He went down to the … Continue reading Guest post – Harry’s null point surgery

Guest post – questions for Harry’s consultant


Harry and his parents had many, many questions before finally deciding to go ahead with null point surgery. Here are just some of the questions the family asked, with the answers they received from the surgical team: Is this a complicated procedure? Yes. Operating on eyes in general is complicated, but when 2 eyes are to … Continue reading Guest post – questions for Harry’s consultant