Albinism and vision

Nystagmus

Nystagmus is an involuntary eye movement that can have many different causes. It can be present from infancy or develop later in life. In albinism, it usually appears during the first months of life and is present in more than 90% of cases.

In albinism, nystagmus is usually horizontal, meaning that the eyes move from side to side. Its pattern, speed and amplitude can vary considerably between individuals, and some people have movements that are subtle and difficult to notice without an eye examination.

For parents, seeing their baby's eyes move involuntarily can initially be worrying. However, people who develop nystagmus in infancy generally do not experience the world as constantly moving or shaking. The brain adapts to the eye movements as the visual system develops.

Nystagmus often becomes less noticeable with age, although it does not disappear completely.

What Is a Null Point in Albinism?

Many people with nystagmus have a direction of gaze in which their eye movements become slower or less intense. This is called the null point or null zone.

If the null point is away from straight-ahead vision, a person may naturally turn or tilt their head to place their eyes in the position where their vision works best. This is known as a compensatory or abnormal head posture.

For some people, this head position causes no significant problems. For others, a pronounced head turn can contribute to neck problems and may also be challenging in social interactions. In selected cases, and where specialist care is available, eye-muscle surgery may be considered to move the null zone closer to the straight-ahead position, helping to correct the abnormal head posture.

There is currently no cure for infantile nystagmus associated with albinism. Support depends on each person’s individual needs and may include low-vision aids and other locally available strategies to help them make the best use of their vision.

Explore more about nystagmus on the Nystagmus Network page.

Photophobia

Photophobia is increased sensitivity to light. It is common in people with albinism and can vary greatly from one person to another.

Because there is less pigment in the iris and retina, more light can scatter inside the eye. Sunlight and its reflections, indoor lighting or glare from windows can therefore cause pain and may make it harder to see.

Photophobia does not mean that people with albinism need to avoid light completely. The amount of protection that works best is to be assessed on an individual basis. Sunglasses, tinted or photochromic lenses, a hat with a brim and adjusting the position or intensity of indoor lighting can all help reduce photophobia.

Very dark lenses are not always the best solution. Because people with albinism already have reduced visual acuity, lenses that block too much light can sometimes make it more difficult to see. The choice of tint should therefore be based on the person’s comfort, visual needs and what is available locally.

Strabismus

Strabismus, sometimes called a squint or crossed eyes, occurs when the two eyes are not aligned in the same direction. It is common in albinism and has been reported in around 70% of people with the condition.

Strabismus in albinism is related in part to the different way the visual pathways develop between the eyes and the brain. It can contribute to reduced binocular vision (the ability of both eyes to work together) and reduced three-dimensional vision, which helps us judge depth using information from both eyes.

Strabismus does not always require treatment. Prescription glasses may help in some cases. When the misalignment is significant, and where specialist care is available, eye-muscle surgery may be considered. The aim and expected benefit of surgery depend on the individual and should be discussed with an ophthalmologist experienced in albinism.

Optic Nerves Misrouting

Vision involves more than the eyes themselves. Information captured by the retina travels along the optic nerves to the brain, where it is processed into the images we see.

The optic nerves from both eyes meet at a point called the optic chiasm. In people without albinism, part of the nerve fibers cross to the opposite side of the brain while others remain on the same side. This creates a balanced pathway that allows information from the two eyes to be combined.

In albinism, this pathway develops differently. More nerve fibers cross over to the opposite side of the brain than usual. This is known as optic nerve misrouting or chiasmal misrouting and is one of the characteristic features of albinism.

This difference can affect how the two eyes work together and contributes to reduced binocular vision. However, the brain develops with this different pattern from early life and learns to process the visual information it receives.

Optic nerve misrouting cannot be corrected with glasses or surgery.

Refractive Errors

Refractive errors occur when the front part of the eye does not focus light precisely on the retina, making vision blurred. They are very common in people with albinism and include nearsightedness (myopia), farsightedness (hyperopia) and astigmatism.

Astigmatism is particularly common in albinism. It occurs when the front surface of the eye is not evenly curved, causing light to focus at more than one point instead of producing a single sharp image.

Unlike foveal hypoplasia, refractive errors can usually be corrected with prescription glasses or contact lenses. Correcting them does not remove the underlying visual impairment caused by albinism, but it can improve the quality of the available vision. However, some people with albinism report that glasses make little or no noticeable difference to their vision.

Visual needs vary from person to person, and individual experience and preference should be respected.