Guest post: Mélissa’s story of acquired nystagmus


Mélissa was a healthy young woman, living and working in Canada until suddenly she acquired nystagmus and everything changed. Melissa is now adjusting to her new life with nystagmus and wanted to share her story of hope for the future … My beautiful, wobbly world My name is Mélissa Khalifé, I’m 29 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus

Seeing Beyond the Eyes


The Nystagmus Network is pleased and proud to have played a tiny part in the Seeing Beyond the Eyes project, headed by Dan Williams at Visualise Training. Thanks to Dan, opticians throughout England and Wales now have a handy resource pack and ongoing training programmes to help them signpost patients for condition specific support, including … Continue reading Seeing Beyond the Eyes

Congratulations, Marsha


Marsha De Cordova MP, Shadow Minister for Disabilities and MP for Battersea, features in the Shaw Trust’s Disability Power 100 2018. This is well deserved recognition for a person who has worked and campaigned tirelessly for disability rights, especially for those with impaired vision, and continues to do so. The Nystagmus Network was delighted to … Continue reading Congratulations, Marsha

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