This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus. Living with AN herself, Patsy … Continue reading #YouMadeItHappen – Patsy
An article recently published online by Everyday Health, discusses the effects of acquired nystagmus on an individual’s ability to drive. The author is an American citizen, living in New York State, but her description of the way in which nystagmus is affecting her sight will resonate with a lot of people. For guidance on nystagmus … Continue reading Acquired nystagmus, MS and driving
The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year. Why raise awareness? We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition. New for 2019 We’ve revised … Continue reading Raising nystagmus awareness in 2019
Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more. Or why not get involved with one of our fundraising activities?
The Nystagmus Network is pleased to be able to bring you so many real life nystagmus stories, thanks to the thoughtfulness and generosity of members of the nystagmus community. Today we bring you Mélissa’s story.
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 30 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus
Professor Fiona Rowe from the Institute of Psychology, Health and Society at the University of Liverpool is currently seeking patients to take part in an online anonymous questionnaire about eye movement disorders. An expert in post stroke vision, Professor Rowe would like to recruit adult patients with acquired nystagmus to help determine future patient treatment … Continue reading Nystagmus acquired after a stroke?
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
Researchers at University College London, Moorfields Eye Hospital, and the University of Oxford are developing magnetic implants to treat nystagmus. Last year, Nystagmus Network assisted Dr Parashkev Nachev, from University College London, in recruiting suitable candidates with the acquired from of nystagmus to take part in the next stage trial, following initial success with a single subject. … Continue reading Magnets and nystagmus – research news update
Helen and her team are working on a virtual reality solution for the problematic sympton of oscillopsia in Acquired Nystagmus. Helen writes: “Many thanks to you all at Nystagmus Network and to your partners Fight for Sight for your support, allowing us to continue the VR project work. We have started and have been able … Continue reading Nystagmus research news update from Dr Helen Griffiths at Sheffield University