Living with Nystagmus: International Nystagmus Awareness Day

On International Nystagmus Day, Leo O’Rouke, spoke with NAB service-user Dawn who has Nystagmus and asked how it affects her life. Currently the condition has no cure.

Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern.

There are two main types of nystagmus:

Congenital nystagmus: This type of nystagmus is noticed in very young children, usually soon after they’re born or in the first years of life. It can be caused by a problem with the eye itself or by a problem with the visual pathway from the eye to the brain.

Acquired nystagmus: This type of nystagmus develops later, generally in adults. Acquired nystagmus is often a sign of another condition like stroke, multiple sclerosis, brain tumour or the effect of a drug or head injury.

We spoke to Dawn who has Nystagmus, who’s own father and daughter have nystagmus too. Dawn explains that because there are others in her family that have nystagmus for her growing up it was quite ‘normal’ and she didn’t feel that she was any different.

However, as Dawn explains there are several issues that arise from having Nystagmus as it affects depth perception, distance vision, adjustment to change in light condition and maintaining a steady focus. Also wearing glasses helps to support the eye so it does not over strain and make the Nystagmus worse but it does not correct the vision.

Dawn explained that people with Nystagmus often like to sit centrally and near the front, however on one such occasion, when booking a PAW Patrol show for her daughter and herself, Dawn wanted to sit near the front and centrally so her daughter could fully enjoy the show. But because these seats were specifically for visually impaired people, and included a ‘meet and greet’, they were more expensive.

Dawn says: “We felt penalised for wanting closer seats for my daughter due to her disability – we discussed this with the show and explained that we didn’t need the meet and greet so wanted the seats at the normal price, but we were told it was not possible. We were very disappointed.”

Moreover, Nystagmus can affect people in a variety of different ways. Dawn gave the example of not being able to meet the legal driving sight distance - this has impacted on what jobs she can apply for to daily errands such as the school run and shopping in the car. Dawn went on to say relying on public transport is also difficult as they don’t always go where she needs to be and often do not run to time. Dawn also said that it can be tricky for her daughter to be able to join in fully with different sports groups.

Dawn said that some groups had told her that her daughter was too able for a disabled sports group but when attending the abled bodied sports group her daughter sometimes found it tricky to access all the apparatus without help, particularly the beam in gymnastics due to her balance as a consequence of movement of focused caused by her Nystagmus.

Currently there is no cure for Nystagmus but with ever advancing medical techniques and medicine one day there might be some better way to manage the condition.

So, remember that it is very important that you go for regular eye checkups to maintain good eye health and keep informed of any changes in the eye. 

If you, a friend, or a loved one are dealing with sight loss and would like some advice or support please call NAB on (01604) 719193.