Albinism and a child's eyes: what vision to expect

Key takeaways

Albinism is inherited and means less melanin in the skin, hair and eyes. In ocular albinism skin and hair are near usual, and the signs can be subtle (AAPOS).
Inside the eye, an underdeveloped fovea, misrouted nerve fibres, a see-through iris and nystagmus lead to reduced sharpness, light sensitivity, squint and refractive error.
AAPOS reports vision from normal in mild forms to worse than 6/60 in severe ones, with near vision often better than distance. Albinism stays the same over time, and the range is a context, not a forecast.
Glasses, tinted lenses, hats, low-vision aids and classroom support help. None adds pigment, so regular eye reviews matter.
Sunburn and skin cancer are more likely, so hats, sunglasses and sunscreen are part of the plan. Genetic counselling is offered, and using it is the family's choice.

Very fair skin, pale hair, light-coloured eyes that seem to tremble, and a child who screws up their face in bright light. When these come together, families often hear the word albinism, and the first questions are about sight. How well will my child see, and what can we do?

This page sets out what albinism is, what it does inside the eye, what the published sources say about the range of vision, what helps, why sun care is part of the eye plan, and what genetic counselling offers. It describes what is reported across many people with albinism. It cannot forecast one child's sight, and the eye doctor who examines your child is the one who can say more.

What is albinism, and is it only about skin and hair?

No. Albinism is an inherited condition in which the body makes less melanin, the pigment that gives colour to skin, hair and eyes (AAPOS). The eyes are involved in every type. There are two main types: oculocutaneous albinism, which affects the eyes, hair and skin, and ocular albinism, which mainly affects the eyes and leaves skin and hair at or near their usual colour.

The signs vary. AAPOS notes that some people with albinism have white hair and very light blue eyes, some have blonde hair and blue eyes, and some have brown hair and brown eyes. The signs are not always noticeable, and a person may not know they have albinism.

Reported frequencies are about 1 in 17,000 people overall (AAPOS), and MedlinePlus Genetics estimates 1 in 12,000 to 15,000 for oculocutaneous albinism in European populations and 1 in 4,000 to 7,000 in African populations, noting that it affects people in all regions and that figures for other populations are hard to estimate.

If a baby has a very pale iris, light sensitivity or wobbling eyes, why a baby's eye colour changes explains why that combination needs an eye examination and is not just a normal colour change. The action: book a paediatric eye examination, and bring the family history, since both parents often look unaffected.

What does albinism do inside the eye?

Melanin helps the eye develop, so reduced melanin changes several parts of the visual system at once. The sources list the same group of findings:

Foveal hypoplasia. The fovea, the small central part of the retina used for fine detail, does not develop fully. EyeWiki calls it the single most important contributor to reduced vision in albinism, and Summers reports it as invariably present.
Nystagmus. The eyes make small, rhythmic, involuntary movements. EyeWiki describes it as starting at about 2 to 3 months of age. Wobbly eyes in a baby covers the causes of nystagmus, albinism among them.
Misrouted nerve fibres. More of the optic nerve fibres than usual cross to the opposite side of the brain, up to 90 per cent according to EyeWiki, where about half is typical. This is linked to squint and to reduced depth perception.
Iris transillumination. With little pigment in the iris, stray light passes through it, and the iris can appear to glow when the doctor shines a light. This is common in albinism but also occurs in unrelated conditions.
Light sensitivity. Scattered light inside the eye makes bright places uncomfortable.
Refractive error and squint. Short-sightedness, long-sightedness and, very commonly, astigmatism occur, and the eyes may drift in or out.

The action: a child with several of these deserves a full examination with dilating drops and, where the doctor decides, an OCT scan of the retina to see the fovea.

What vision can a child with albinism expect?

It varies widely, and no source gives a single figure. AAPOS states that vision can be normal for those mildly affected and as poor as legal blindness (worse than 20/200, which is 6/60) or worse for those with more severe forms. It adds that near vision is often better than distance vision, and that people with the least colour in their eyes generally have the poorest vision. Legal blindness is a measured level of sharpness; it does not mean no sight.

The fovea gives a way to put numbers on this. In a 2011 study in Ophthalmology, researchers graded foveal hypoplasia from 1 (mildest, a shallow pit still present) to 4 (most marked) in 69 people, about half of them with albinism.

Median best-corrected acuity worsened with each grade: 0.2 logMAR for grade 1 (roughly 6/9.5), 0.44 for grade 2 (roughly 6/16.5), 0.60 for grade 3 (roughly 6/24) and 0.78 for grade 4 (roughly 6/36). The authors suggest the grading helps predict acuity. Those are medians for a group, so individual children fall above and below them.

In infancy, Summers notes that visual development is often delayed, and that grating acuity can be used to document it in children too young to name pictures. AAPOS describes albinism as lifelong and stable over time. The action: ask the eye doctor for your child's measured acuity at each visit and what it means for reading and school, since the group figures above are a context and not a prediction.

What helps a child with albinism see better?

Several things help, though none adds pigment. AAPOS is direct that there is no way to get the body to make more pigment, and that vision is often still blurry even with treatment. It also stresses that regular eye care matters. The measures that are used:

Glasses for the refractive error. Summers reports glasses are often needed to improve both acuity and eye alignment, and EyeWiki advises an early examination so large refractive errors and lazy eye are caught.
Tinted lenses or sunglasses, and a wide-brimmed hat, for the glare. AAPOS recommends prescription glasses with tint.
Low-vision aids. Depending on the person, AAPOS lists reading glasses with a strong lower part, contact lenses, hand-held magnifiers, small telescopes and a larger computer screen.
Treatment of the eye movements. Squint and nystagmus can be treated with glasses, patching or surgery, and AAPOS notes that a head turn can improve.
Support at school. AAPOS suggests students, parents and teachers work as a team on seating, lighting and vision aids, and notes that children with albinism usually have normal intelligence.

Support groups also help, according to AAPOS, because families and children meet others in the same position. The action: ask the eye doctor for a written plan covering glasses, tint, aids and the school letter, and review it as the doctor advises as your child grows.

Why is sun care part of the eye plan?

Because in oculocutaneous albinism the lack of pigment affects the skin as well as the eyes. (Ocular albinism leaves skin close to usual, and the doctor will say which applies.) AAPOS and MedlinePlus both note that people with albinism are more likely to get sunburn and skin cancer, and AAPOS strongly encourages sunscreen, large hats, sunglasses and tinted prescription glasses. EyeWiki adds clothing to the list and advises dermatological care alongside ophthalmic care.

The same hat and tinted lenses that comfort the eyes also protect the skin on the face, so one routine covers both. Sun protection for children's eyes sets out the habits in detail. The action: make the hat and the tinted glasses the first thing that goes on at the door, and ask your family doctor about regular skin checks.

What should we watch for, and what about genetic counselling?

Albinism is stable, so a change in how your child sees, a new head posture, a squint that is getting worse or a new complaint of eye pain should be mentioned to the eye doctor promptly. AAPOS also lists two rare conditions that can accompany albinism: Hermansky-Pudlak syndrome, which can cause easy bruising and bleeding, and Chediak-Higashi syndrome, which can bring more infections.

Unusual bruising or bleeding is the reason to check for the first. Because some inherited conditions come with eye checks through childhood, eye checks for children with Down syndrome and other genetic conditions shows how such a schedule is planned.

On inheritance: for most oculocutaneous types, AAPOS explains, both parents carry a gene without having albinism themselves, and each pregnancy then has a 1 in 4 chance of a baby with albinism. Ocular albinism is carried on the X chromosome, so each son of a mother who carries the gene has a 50 per cent chance of having it.

AAPOS recommends genetic counselling so that counsellors can explain the chances for future children in detail, and EyeWiki notes that genetic testing and counselling may offer valuable support. Whether to use it is the family's choice. The action: if you want it, ask the eye doctor or family doctor for a referral to a genetic counsellor.

Tell the eye doctor sooner if your child…

Is a baby with shaking eyes, a very pale iris or sensitivity to light and has not yet had a paediatric eye examination.
Seems to see less than before, holds things very close, or has a squint or head turn that is getting worse.
Bruises or bleeds easily, or has frequent infections: tell the doctor, as a rare related syndrome can be checked for.
Burns easily in the sun, or has a new or changing patch or mole on the skin.
Has a new red, painful eye or a sudden drop in vision: go the same day.

Is this urgent? Today, this week or routine

Common questions

Will my child with albinism be blind?

Total blindness is not what the sources describe. AAPOS states that vision can be normal in mild cases and as poor as legal blindness (worse than 20/200, or 6/60) or worse in more severe forms, with near vision often better than distance. Legal blindness is a measured level of sharpness and does not mean no sight.

Why do my child's eyes shake?

The shaking is nystagmus, a common finding in albinism. EyeWiki describes it as starting at about 2 to 3 months of age in affected infants. It is linked to the underdeveloped fovea and to the way the nerve fibres are routed, and glasses or eye muscle surgery can help in some children.

Can glasses correct the vision in albinism?

Glasses help with the refractive error, and Summers reports they are often needed to improve both acuity and eye alignment. They do not correct the underdeveloped fovea, which is the main limit on sharpness. AAPOS says vision is often still blurry even with treatment.

Does albinism get worse as a child grows?

AAPOS describes albinism as a lifelong condition that stays the same with time. Summers notes that visual development is often delayed in infancy. Any change in how your child sees should be checked, since it may have another cause.

Does my child need sunglasses and a hat?

Light sensitivity is common, and AAPOS strongly encourages large hats, sunglasses or tinted prescription glasses, together with sunscreen. The skin is at higher risk of sunburn and skin cancer, so the same habits protect the skin and the eyes.

Will my next baby have albinism?

It depends on the type. For most oculocutaneous types, AAPOS explains that both parents carry a gene and each pregnancy has a 1 in 4 chance. For ocular albinism, each son of a carrier mother has a 50 per cent chance. A genetic counsellor can explain this for your family, and whether to see one is your choice.

How can school help a child with albinism?

AAPOS suggests that students, parents and teachers work as a team on seating, lighting and vision aids such as magnifiers or a larger screen, and notes that children with albinism usually have normal intelligence. Ask the eye doctor for a written letter describing your child's vision and needs.

Is there a treatment that restores pigment?

Not at present. AAPOS states that there is no way to get the body to make more pigment. The treatments in use address the eye findings: glasses, tints, low-vision aids, and treatment of squint or nystagmus. Trials of other approaches are early-stage and are not a reason to delay the usual care.

References

American Association for Pediatric Ophthalmology and Strabismus · Albinism · aapos.org
Summers · Albinism: classification, clinical characteristics, and recent findings (Optometry and Vision Science, 2009) · pubmed.ncbi.nlm.nih.gov
Thomas et al. · Structural grading of foveal hypoplasia using spectral-domain optical coherence tomography: a predictor of visual acuity? (Ophthalmology, 2011) · pubmed.ncbi.nlm.nih.gov
MedlinePlus Genetics, US National Library of Medicine · Oculocutaneous albinism · medlineplus.gov
EyeWiki, American Academy of Ophthalmology · Albinism · eyewiki.org

By Dr Chan Li Yen. General information only. It does not replace a consultation. If you are worried about your child's eyes or vision, please see an eye doctor.

Very fair skin and hair, light eyes and a wobble: albinism and how a child sees