Tag: nystagmus network

For Nystagmus Awareness Day 2023 we invited members of the nystagmus community to share their story to help people in the wider population to understand the condition.

Thank you to everyone who shared their story with us.

You can read all our nystagmus stories here

This is Mason’s story …

We first noticed Mason’s eye movement when he was around 8-10 weeks old. His eyes would jerk to the right. My elder brother also has quite severe nystagmus so instantly my gut instinct told me it was nystagmus, however I just never considered that my children would have it as I don’t have it myself, although my mum has very mild nystagmus. As Mason was born at 35 weeks and had some trauma surrounding his brain, we already had an extra eye and hearing test booked in. This meant we were fast tracked for an appointment which we were extremely grateful for! The Ophthalmologist clinically confirmed it – congenital jerk nystagmus. 

The first year of his life left us in constant worry about how he’d struggle to meet milestones. Would he be a late walker? Would he be able to drive when he’s older? However, as time has gone by, he’s really shown us just how determined he is to not let his eyes stop him from doing everything he wants. He began to walk around 15 months and now at the age of 2 he doesn’t stop running! His confidence can sometimes be a bit knocked down when exploring new, big places with a lot to take in, but generally he is fine once shown around and how to access what’s around him. 

We see a Visually Impaired teacher on a regular basis who will support him in nursery and school. She is just amazed at how able he is. His eyesight is incredible and he often spots things before I do! He does have a very mild prescription for glasses, but being the crazy active toddler he is, he won’t wear them and is more than happy to go without at his own choice. 

He loves kicking a ball about, loves playing with his cars, loves being outdoors and loves spending time with family. 

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. Everyday my little boy makes me so incredibly proud; his achievements motivate me to be the best I can too. 

Thank you to everyone sharing their stories with us for Nystagmus Awareness Day 2023.

You can share your story here

This is Claudia’s story …

Ours isn’t a complete journey, far from it. In fact, it’s just the beginning. Claudia is 6.

Claudia was diagnosed at 9 months old.

I’d noticed the flicker in her eyes.

Is this developmental? I’m not sure I remember her brother having the same issue, but it was a long time ago (4 1/2 years between them). Will it pass? She’s a happy, healthy baby …

The (very concerned) GP, who’d never seen anything like it, referred us to the non-emergency, urgent clinic at our local hospital.

Cue tests, more tests, fasting, sedation and MRI scans. A very long few days of constant worry.

Diagnosis: congenital nystagmus.

Prognosis: a non-degenerative condition. Unlikely to drive a car or catch a ball.

I don’t diminish their pragmatism. These outcomes are likely (most definite) in Claudia’s case. However, her vision is her only boundary. Apart from not being able to see very well, Claudia is wilful, stubborn, contrary, assertive, wise, articulate, bright, funny, sassy, endearing and beautiful – no different to any other child her age.

She has taught me to be patient, tolerant (not always easy when you’re being back chatted and outsmarted by a 6 year old!), inclusive and mindful of others. And has opened up an entire new way to see the world and its endless possibilities.

In time, we have also learned that Claudia is severely colour blind (she sees black, white and red for sure, the other colours kind of merge together – but she can determine between lighter and darker shades) and photophobic (she wears react-to-light glasses and an array of peaked caps and visors throughout the year).

There may be other issues that arise in the future, but we are closely monitored and very well looked after by the brilliant team at Royal Derby Hospital. We await genetic testing, too.

The remainder of Claudia’s senses, however, are on high alert. Her (somewhat selective!) hearing is refined. She hears music through her whole being. She dances like everyone is watching. Her grasp of language is beautiful and her interpretation of the world leaves me stunned and floored, regularly.

This girl endears anyone and everyone to her that crosses her path. And I know, she will move mountains.

Go get ‘em, girl. The world is yours.

We are delighted to share your stories of living with nystagmus to help raise awareness.

You can share your story here

This is Ella’s story …

Ella was first diagnosed with nystagmus at 3 months old. A routine check-up at the doctor’s turned into something completely different. The doctor told us she had nystagmus (this is caused by Oculocutaneous Albinism) but didn’t elaborate any further other than to say she would be referred to the eye hospital and she might not be able to see very well. As new parents this was frightening and very upsetting. We did have lots of support from the hospital and the Nystagmus Network who have been amazing. The helpline has made all the difference. Talking to someone who understands our feelings and just to listen to us.

Ella is now 4 years old and will be starting school in September. She is amazing beyond words. She participated last year in a dance show in front of a large audience, takes dance and swimming classes regularly, loves going on her scooter everywhere and she does not let anything hold her back. Her 8-month-old sister was also diagnosed recently and Ella said to us: “Well me and Lola will be able to talk to each other about it and support each other”.

Very proud parents. 

All this week we’ve been sharing your nystagmus stories to help raise awareness of nystagmus for Nystagmus Awareness Day 2023.

You can share your story here

Robyn was first observed to have wobbly eyes at the age of 5. With no family history of nystagmus, it quickly became concerning as to what was the cause. Robyn was seen by Ophthalmology who referred her on for what felt like every test going. CT head, X-rays, blood tests, ultrasound scan, referral to Neurology, Electro-Retinographic studies. Which she took all in her stride. My worry went from the possibility of nystagmus to the chance her wobbly eyes could be caused by something much worse. Thankfully, 18 months later, all tests clear, she was given a diagnosis of Congenital Idiopathic Nystagmus. It was at this point I discovered the Nystagmus Network.

Robyn, now age 7, will say there’s nothing wrong with her eyes, they’re just a bit wobbly. As a parent you worry about the now, and you worry about the future. However, Robyn’s love for life and pure determination have shown me I don’t have to be so worried. The hurdles she comes across she takes in her stride and discovers solutions for her to manage them in her own way. While she may not be able to hit certain expected milestones such as learning to drive and riding a bike is something we still haven’t quite mastered, despite the many tries (!) we’re able to celebrate other aspects of life and achievements#, from running races on sports day to threading beads onto string and an upcoming ballet exam she is determined she will get top marks in. I have been so incredibly grateful to the Nystagmus Network for all the information they have and support they offer. We will both continue to learn and adapt to future challenges, but I shall take heed from Robyn’s determination and resilience in how we face them.