Living with nystagmus

Nystagmus (pronounced nis-tag-mus) is a condition that causes uncontrolled, constant rapid movement of the eyes. This movement is likely to cause vision problems. The underlying cause of nystagmus is often neurological, involving how the eye and brain work together to produce vision.

Nystagmus can occur in infants and adults, although the causes may be different. It is a common cause of vision impairment in children, who will benefit from early help and support to make the most of their eyesight. For adults, nystagmus can be a sign of another underlying condition that needs treatment.

You can find more information about the causes, symptoms and treatments of nystagmus on the NHS website.

Supporting children with congenital nystagmus

In this video, Nicky shares her experience of living with nystagmus.

Nystagmus is the most common type of vision impairment in school-aged children (Source: Nystagmus Network). Children with infantile nystagmus syndrome are often diagnosed at a very young age. Getting advice and support from the start will make all the difference.

• Young children will benefit from plenty of stimulation in the early years to help them develop and make the most of their useful vision. We can help provide ideas and resources specially designed for children with visual impairment.
• Guide Dogs can help you get educational support for your child. When preparing to start a new school, talk to them about your child's condition so they understand how it affects them and the adaptations they might need. There are Qualified Teachers for Visual Impairment who provide expert support and advice.   
• Doing a lot of reading and studying can cause eye strain. Encourage children to take frequent breaks and use aids that help, such as magnifiers or enlarged font CustomEyes books.  
• Many people with nystagmus find they see best when holding their head in a particular position – the ‘null zone’ or 'null point'. Children who grow up with nystagmus tend to find their  null zone’ naturally, so try not to discourage them from using the position that works best for them.
• Children may feel self-conscious about having nystagmus and the way it affects them. Having the right support early on can help them fulfil their potential and build their self-esteem. We offer family support at every stage of their development. 
• It can help to meet other parents and families living with nystagmus. They'll understand your experiences and are often a great source of emotional support. The Nystagmus Network offers a parents' forum.

Living independently with nystagmus

People with nystagmus can have very different experiences, depending on how much their functional vision is affected. However, most people live independent, fulfilling lives with the right support.

If you're an adult living with acquired nystagmus:

• There may be treatments that can help alleviate the symptoms.
• Your ophthalmologist can help you get the aids and support that you need, for example, by referring you for a low vision assessment (LVA). 
• Local social services also offer advice on getting out and about safely and practical advice for managing at home.
• There are plenty of low-cost everyday changes that will help make the most of your vision. You can use large print books and tablets or e-readers with adjustable print sizes. Make the most of accessibility features on your smartphone, apps, and smart devices, read our technology tips for more help. Having plenty of good light around the home will also help.

At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you.

The ways we could help you:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

Working with nystagmus

Depending on how nystagmus affects your vision, you may need adjustments to help you manage at work. Employers have a legal responsibility to make reasonable adjustments to accommodate your needs. You can speak with your manager about what will work best for you. This might include:

• Aids such as magnifying lenses to help with reading.
• Better quality lighting to help you see clearly.
• Time off for appointments and check-ups.
• A flexible working pattern that allows you to manage 'bad eye' days. 

The Access to Work scheme gives employers a grant to help pay for equipment or services you need to work. These grants can be used in many ways. For example, it could help you get safely to and from work if you can’t use public transport or pay for a support worker to assist you.

Driving with nystagmus

Congenital nystagmus often causes difficulties with depth perception and judging distances. Many people living with nystagmus also find their sight worse when tired, stressed, or feeling unwell. This means you may have ‘good eye’ days and ‘bad eye’ days. Speak to your ophthalmologist for advice about driving based on your circumstances and eyesight.

If you develop acquired nystagmus, you must report it to the DVLA. As with any eye condition, you have to meet the DVLA’s minimum standard to continue driving. Your ophthalmologist will be able to advise you about driving with nystagmus.

Support for people with nystagmus

It’s natural to feel worried about a nystagmus diagnosis, whether for yourself or your child. You may be dealing with an underlying condition at the same time as adjusting to living with nystagmus. These can affect everyday life but won't stop you or your child from being independent and doing what you enjoy, with the right help and support.

Support organisations

• Nystagmus Network
• Victa Parent Portal - a support hub for parents of children with a vision impairment
• Walk for Wiggly Eyes - includes a hub for social groups for people and families impacted by Nystagmus

FAQs