Find lots of nystagmus stories people have generously shared with us here.
Welcome to our collection of personal nystagmus stories, shared to help people understand the condition better.
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Vivien‘s story
How could Vivien Jones have guessed, as she sat in 1984 at her kitchen table stuffing envelopes with information leaflets about nystagmus for other parents just like her, whilst her infant son, Sam newly diagnosed with nystagmus, slept upstairs in his cot, that 40 years later she would be at the helm of a national charity, leading the way in nystagmus research, awareness, support and information.
Watch Vivien’s story on video here
Claire’s 1984 Story
“On New Year’s Eve 1984 my parents went on their first date. And I guess that’s where my nystagmus story begins.”
Read Claire’s 1984 story here
Patricia’s Story
“My name is Trish (Patricia). I was born in 1956. Nystagmus was virtually unknown back then. My parents struggled to keep me in mainstream school and I faced many challenges including bullies and unkind kids.”
Read Patricia’s story here
Glen’s Story
“I was diagnosed with nystagmus almost from birth and I had glasses from around 18 months. I attended regular state school and struggled to see, however my parents were keen to keep me in mainstream education against the eye specialists advice. I remember going to hospital appointments fairly frequently and my parents had to show examples of my school work to the consultant, to backup their opinion that I should remain in mainstream schooling.”
Read Glen’s story here
Flynn’s Story
“This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right.”
Read Flynn’s story here
Jan’s 1984 Story
“I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters.”
Read Jan’s story here
Marsha‘s story
Marsha celebrates Nystagmus Awareness Day and 40 years of the Nystagmus Network.
Watch Marsha‘s video message here
Drew‘s Story
“My name is Drew, some may know me as DrewpyDesigns, I was born with Albinism and Nystagmus, but that’s not my full story, I’m a 3 time TTT champion, I’m self employed as a graphic designer, I’m a streamer and content creator as well as ambassador for Speed Of Sight. I have never let my disability stop me and urge others to live their life without a disability stopping their dreams too.”
Read Drew‘s story here
Paul‘s 1984 story
“Sometimes I really don’t know where the time goes. Back in 1984, it was my first year at secondary school and my parents were extremely proud of me for getting into the local grammar school. This was in Ilford, Essex.”
Read Paul‘s 1984 story here
Taylan‘s story
“My name is Taylan. I’m 8 years old and I’m nearly 9. My mummy was really worried when she found out I had nystagmus.”
Read Taylan‘s story here
Angela‘s story
“I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents.”
Read Angela‘s story here
Nosheen‘s story
“I was born on 23 June 1984, three days after the Nystagmus Network was founded. I had no health conditions and lived a healthy life until I was almost 35, when I was diagnosed with a congenital brain condition that caused acquired nystagmus. Doctors do not know why I had no symptoms until this age.
Now, as I celebrate my 40th birthday alongside the Nystagmus Network’s Ruby anniversary, I am also marking five years since my diagnosis. Although nystagmus has changed my life, I still try to do the things I loved before and enjoy spending time with my three children.”
Lyla‘s story
“Lyla was diagnosed with nystagmus from birth and she is now 5. Registered as partially sighted, she is an absolute superstar who loves to do everything and never lets anything stop her! She has recently started to learn swimming after initially finding it difficult to get in the pool and she loves to ride ponies. Yes, she faces many obstacles daily, but she meets them all with a gorgeous smile and an infectious personality filled with determination and love!”
Vicky‘s 1984 story
“My favourite subjects at secondary school in 1984 were hockey, music and maths.
Fast forward 40 years and those subjects still dominate my life. Professionally I’m Finance Director for an AI Consultancy and Treasurer for the Nystagmus Network. In my spare time I play flute for the local orchestra and spending time with my sports-mad family tends to revolve around various sporting events.”
Read Vicky‘s story here
Harshal‘s 1984 Story
“The year was 1984 and in a little corner of Middlesex, a baby boy was just starting to explore the world, especially a local park that our family home shared a fence with that had an excellent playground.”
Read Harshal‘s story here
John‘s 1984 story
“We belong to many tribes, often overlapping, during our lives. The story of my nystagmus tribe starts in 1984. In particular, the day I first met others with nystagmus and parents, like Vivien, of children with nystagmus. It still ranks as one of the most important days in my life.”
Read John‘s story here
Haydee‘s story
Haydee was diagnosed with congenital Nystagmus at the age of 6 months and was registered as partially sighted at the age of 5.
Her Nystagmus does not stop her from doing anything, especially football. She plays for her local grassroots girls under 12s football team and she’s currently training with Manchester United PAN disability team ready to start her first season with them in September.
Andrew‘s story
“
My name is Andrew and I have 4 eye conditions including nystagmus. I also have absent chiasm, Optic Nerve Hypoplasia and a slight Albinism.
I have recently been involved with the Visually Impaired Sailing Association. They sail from many locations around the UK. New members are always welcome.
“
Onyeka‘s Story
“Growing up, I never heard the word nystagmus.”
Read Onyeka‘s story here
Sue‘s 1984 story
“In 1984 I had never heard of nystagmus and had no connection with the condition at all.”
Read Sue‘s 1984 story here
Cohen‘s story
“He has a lovely group of friends in school and every school report is about him growing in confidence which is so nice to hear.”
Read Cohen‘s story here
Ava‘s story
Ava was born with congenital nystagmus. She loves rugby and swimming. She’s full of life and lets nothing get in her way.
Peter‘s 1984 story
“At 12 years old, I was preparing for my first summer Scout camp in Guernsey, which required a 10-hour ferry ride from Plymouth, marking my first time leaving mainland UK.”
Read Peter‘s story here
Ruby‘s story
“Ruby has just turned 5 and started Reception in September 2023 which she is loving! Her favourite colour is purple. She loves the BBC TV show Dog Squad and can’t wait till she can get a guide dog as she thinks that they are amazing.”
Read Ruby‘s story here
Marlow‘s story
“I was born with congenital nystagmus and have been apart of the network for 10 years. I am 24 years old and a middle school history teacher. Aside from my ruby colored hair and red being my favorite color, I am an active member of our community.”
Read Marlow‘s story here
Kathryn‘s 1984 story
“In September 1984 I started my training as an orthoptist at Moorfields Eye Hospital School of Orthoptics.”
Read Kathryn‘s story here
“Be confident, be proud and hold your head up high.”
Watch Marsha’s video here
“Personally, I don’t know what life with nystagmus is like, but I do know that with the right mindset and determination it can’t stop you from doing what you love.”
Read Mason’s story here
“Her friends don’t see her as visually impaired, they just see her as Savannah.”
Read Savannah’s story here
Gerard has recorded his nystagmus story in the form of a song he wrote for his new musical ‘Painting the Town’ about a visually impaired painter and decorator.
Watch Gerard’s video here
“I found just being confident and proud of my visual impairment helps so much.”
Read Isabelle’s story here
A big brother and sister are raising awareness of nystagmus for their little brother, Jude.
Read Jude’s story here
Peter shares his nystagmus story in the form of a poem.
Read Peter’s story here
“I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment.”
Read Gemma’s story here
“Ella is now 4 years old and will be starting school in September. She is amazing beyond words.”
Read Ella’s story here
“I have embraced all the opportunities in life that come my way.”
Read Hazel’s story here
“Robyn’s love for life and pure determination have shown me I don’t have to be so worried.”
Read Robyn’s story here
“We are stronger together and shining a greater light on this condition in our own unique ways.”
Read Harshal’s story here
“I don’t know what your world looks like, but mine probably looks a bit different.”
Read Eliana’s story here
“I became determined to prove that not being able to drive wouldn’t stop me from being successful.”
Read Bryony’s story here
“With challenge, comes growth, wisdom and power!”
Read Sherifa’s story here
“She has opened up an entire new way to see the world and its endless possibilities.”
Read Claudia’s story here
“Our story will continue. Our boys’ journeys will take them which ever way they choose – they just need some extra support and consideration.”
Read Peter’s story here
“To say we are proud of our son is an understatement!”
Read Vivien’s story here
“My hope for the future is that people will understand more about what nystagmus is.”
Watch Andy’s video here
“If only I had known back then what my daughter would go on to achieve, maybe I wouldn’t have worried so much.”
Read Sue’s story here
“This is only the start of our nystagmus story with great things to come.”
Read James’s story here
“When I look back to that first night nystagmus was mentioned to me I can’t believe how far we’ve come.”
Read Sharon’s story here
John has sent a letter to his 9-year-old self
Read John’s story here
“I have spent 60+ years thinking this was just a funny and rather unique aspect of being me.”
Read Carol’s story here
“Not many people know what nystagmus is … it’s a very difficult condition to describe.”
Read Joel’s story here
“My daughter is 18 months old and it was clear from early on that her eyesight was better than mine.”
Read Julia’s story here