Our collection of stories

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

Marsha wears a red and white floral dress. She is standing in a garden, smiling.

“Be confident, be proud and hold your head up high.”

Watch Marsha’s video here

Mason is sitting on the floor of a sports hall holding a water bottle.

“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

Savannah wears a yellow polo shirt and blue-framed glasses.

“Her friends don’t see her as visually impaired, they just see her as Savannah.”

Read Savannah’s story here

Gerard with a beard. He is wearing a blue shirt.

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

Isabelle smiles for the camera.

“I found just being confident and proud of my visual impairment helps so much.”

Read Isabelle’s story here

Three young children sit together on a sunny day.

A big brother and sister are raising awareness of nystagmus for their little brother, Jude.

Read Jude’s story here

Peter smiles for the camera. He is wearing a purple shirt.

Peter shares his nystagmus story in the form of a poem.

Read Peter’s story here

Gemma smiles for the camera. She has long, very fair hair and wears a dark top and necklace.

“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 wears a pink dress and stands with someone wearing a large character costume.

“Ella is now 4 years old and will be starting school in September. She is amazing beyond words.”

Read Ella’s story here

Hazel is running a marathon. She is wearing a white T-shirt, black shorts and a bandana.

“I have embraced all the opportunities in life that come my way.”

Read Hazel’s story here

Robyn stands in a garden, wearing a Nystagmus Network T-shirt.

“Robyn’s love for life and pure determination have shown me I don’t have to be so worried.”

Read Robyn’s story here

Harshal wears a suit and tie and smiles for the camera.

“We are stronger together and shining a greater light on this condition in our own unique ways.”

Read Harshal’s story here

Eliana is sitting on the floor cuddling a black Labrador dog.

“I don’t know what your world looks like, but mine probably looks a bit different.”

Read Eliana’s story here

Bryony smiles, wearing a summer dress and holding a glass of wine.

“I became determined to prove that not being able to drive wouldn’t stop me from being successful.”

Read Bryony’s story here

A picture of Sherifa wearing a white long sleeve shirt, baby blue trousers, black large framed glasses, black curly hair and black sandals. Standing on a bridge looking towards a flowing river.

“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

Peter wears a white shirt and stands against a green glass screen.

“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

Vivien stands in front of a Nystagmus Network banner.

“To say we are proud of our son is an understatement!”

Read Vivien’s story here

Andy McFarlane wears an open necked white shirt, dark jacket and glasses.

“My hope for the future is that people will understand more about what nystagmus is.”

Watch Andy’s video here

The view of a woman's face from above. Someone's hands are applying eye makeup to the seated woman.

“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

James, wearing sunglasses, smiles for the camera. His wife stands beside him holding a small child wearing a blue T-shirt.

“This is only the start of our nystagmus story with great things to come.”

Read James’s story here

Sharon wears a black and white floral top and glasses.

“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 aged around 8 - a black and white photo.

John has sent a letter to his 9-year-old self

Read John’s story here

Carol smiles at the camera.

“I have spent 60+ years thinking this was just a funny and rather unique aspect of being me.”

Read Carol’s story here

Joel head shot.

“Not many people know what nystagmus is …  it’s a very difficult condition to describe.”

Read Joel’s story here

Julia and her young daughter smile for the camera. They are at the seaside and the child is holding a toy windmill.

“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