Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an … Continue reading Meet Lucie!
Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two … Continue reading Informative, inspiring, emotional and motivating!
I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened … Continue reading Mark’s story
have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it. … Continue reading Sound tennis
It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do? It’s just one of those things. Yet it didn’t seem like that at the time. Even … Continue reading Can people see past my wobbly eyes?
I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all … Continue reading I’m the parent I never thought I’d be
I’d be foolish to pretend that secondary school was a breeze with nystagmus. There were two ways to go about it; suffer in silence, or rise to the challenge. As for me, admittedly I did both. The first obstacle was getting there, which shouldn’t have been a problem because I lived local. My mum walked … Continue reading Wobble and me (part 2)
Future generations of orthoptists graduating from Sheffield University will be even better placed to help nystagmus patients thanks to a new £30,000 eye movement recording laboratory. Only two other universities (Liverpool and Glasgow Caledonian) train orthoptists, so Sheffield’s new facility will have big impact on the profession. Within five years around 250 orthoptists will have … Continue reading Training boost for orthoptists
My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause. So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people … Continue reading George has nystagmus – goodbye!
The woman at the piano stopped playing. She asked me whether I liked to sing. I replied I loved singing! She told me to join in with the rest of the school then. Just because I was new didn’t mean I got any special treatment. She began to play again. I squinted up at the … Continue reading Wobble and me (part 1)