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.
You can share your story 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


“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.”