Living with nystagmus

It’s natural to feel worried about a nystagmus diagnosis, whether for yourself or your child. Living with nystagmus can mean sight loss and problems with balance and judging distances. 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.

Supporting children with congenital 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. Get 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 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.
• 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. 
• You might experience the sensation ‘oscillopsia’ where the world feels like it’s moving around you, caused by the involuntary movement of the eyes. This can cause dizziness and feel disorientating.
• 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.
• You may be dealing with an underlying condition at the same time as adjusting to living with nystagmus. This can be an emotional time, but you don’t have to deal with it alone. Find support and services nearby with our help.

Regular eye tests are important for everyone living with an eye condition. Your optometrist can check your eye health and make sure any other problems are found and treated. Having up-to-date prescription glasses or lenses to correct any refractive errors helps ensure your vision is as clear as it can be, to make managing your nystagmus easier. 

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.

Nystagmus and work

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.

Frequently asked questions

The Royal College of Ophthalmologists champions excellence in the practice of ophthalmology and is the only professional membership body for medically qualified ophthalmologists. The RCOphth is unable to offer direct advice to patients. If you’re concerned about the health of your eyes, you should seek medical advice from your GP, optometrist or ophthalmologist.

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