Support nystagmus awareness on ‘Wobbly Wednesday’

This coming Wednesday (4 November 2015), the Nystagmus Network is encouraging people to hold events to raise awareness of the condition that affects around one in 1,000 people in Scotland. ‘Wobbly Wednesday’ events will raise funds, but more importantly awareness and understanding, of a condition that is characterised by an involuntary movement of the eyes, which often results in seriously reduced vision.

We have many patients with nystagmus and are especially pleased to help raise awareness of the condition. A Wobbly Wednesday walkabout to a wobbly jelly afternoon tea, there are lots of easy ways to support this event.

The condition, which ranges in severity, can result in those with nystagmus being unable to drive or use a computer. Contact lenses and glasses can result in improved vision however will not reduce the uncontrolled to and fro eye movement.

Nystagmus and contact lenses

For a condition that affects an estimated 60,000 people across the UK, it always surprises us how low awareness levels are and those who are diagnosed with nystagmus can feel isolated and unsure of the best options available to them.

In our experience those with the condition usually do better with contact lenses. Soft lenses have the flexibility to move with the eye so they are always looking through the lens. This is especially true if their ‘null point’ (the angle at which the eyes move least) is off to the side, which it is in most cases. You might notice people with nystagmus turn their head to one side a lot – this is where their eyes move least and the vision is most stable and therefore best.

There is also some argument that wearing rigid gas permeable (RGP) lenses provide physical feedback to the brain that the eyes are moving and may reduce the level of the ‘wobble’ – a benefit of them being rigid and less comfortable than soft lenses. This is an example of where a ‘one size fits all’ approach doesn’t work. The majority of our patients find soft lenses to be the best solution, however a handful have found RGPs to be more effective in controlling their condition.

Nystagmus is often a symptom of other conditions such as albinism, aniridia or achromatopsia so the complete picture must always be considered before working with the patient to agree the most appropriate way to manage it.

For further information on how you can support Wobbly Wednesday and to access a range of resources visit www.nystagmusnet.org. Or to donate to the charity text WWNN15 £10 to 70070.