Albinism: what it is, causes, symptoms, eye care and sun protection

The NHS says albinism affects the production of melanin, the pigment that colours skin, hair and eyes. People with albinism have a reduced amount of melanin, or none at all, which can affect their colouring and their eyesight. It is a lifelong condition, but it does not get worse over time.

The Albinism Fellowship, a UK charity run by people with albinism and parents of children with albinism, provides information, advice and support for people with the condition and their families.

The NHS says people with albinism often have white or very light blonde hair, although some have brown or red hair, depending on how much melanin their body produces. Very pale skin that burns easily in the sun and does not usually tan is also typical. The reduced melanin can also cause eye problems because melanin is involved in the development of the retina.

The NHS adds that some young children with albinism may appear clumsy because eyesight problems can make movements such as picking up an object difficult, and that this should improve as they get older.

• White or very light hair, though some people have brown or red hair.

• Very pale skin that burns easily and does not usually tan.

• Poor eyesight: short-sightedness, long-sightedness and low vision that cannot be corrected.

• Astigmatism, which causes blurred vision.

• Photophobia, sensitivity to light.

• Nystagmus, involuntary side-to-side eye movements that reduce vision.

• Squint, where the eyes point in different directions.

The NHS says albinism is passed on through genes. The two main types are oculocutaneous albinism (OCA), the most common type, and ocular albinism (OA), a rarer type that mainly affects the eyes.

In all types of OCA and some types of OA, the NHS says albinism is passed on in an autosomal recessive pattern: a child has to get 2 copies of the gene, one from each parent. If both parents carry the gene, there is a 1 in 4 chance that their child will have albinism and a 1 in 2 chance that their child will be a carrier. Carriers do not have albinism but can pass on the gene.

The NHS says there is no cure for the eye problems caused by albinism, but a number of treatments, such as glasses and contact lenses, can improve vision. As a child gets older they will need regular eye tests and are likely to need glasses or contact lenses.

The NHS lists low-vision aids including large-print or high-contrast materials, magnifying lenses, small telescopes, large computer screens, speech-to-text software and tablets or phones that magnify the display. It says sunglasses, tinted glasses and a wide-brimmed hat can help with light sensitivity.

The NHS says nystagmus has no cure but is not painful and does not get worse, and that an ophthalmologist can advise. Squints are treated with glasses, eye exercises, surgery and injections into the eye muscles, and a patch may be used for a lazy eye.

The NHS says people with albinism lack melanin in their skin and are at increased risk of sunburn and skin cancer. It advises wearing sunscreen with a high SPF, with SPF 30 or more giving the best protection, spending time in the shade when the sun is strongest, and covering up with suitable clothing and sunglasses.

The NHS general sun safety advice adds that sunscreen should have at least 4-star UVA protection, be re-applied frequently, and not be relied on alone. The NHS says to report any new mole, growth or lump, or any mole, freckle or patch that changes size, shape or colour, to a doctor as soon as possible, because skin cancer is much easier to treat if found early.

The NHS says albinism is usually obvious from a baby's appearance at birth. The baby's hair, skin and eyes may be examined for signs of missing pigment, and because it can cause eye problems the baby may be referred to an ophthalmologist for tests. Electrodiagnostic testing, using small electrodes on the scalp to test the connections between the eyes and the vision part of the brain, is sometimes used.

If you have a family history of albinism or a child with the condition, the NHS suggests talking to a GP about referral for genetic counselling, to discuss how it was inherited and the chances of passing it on.

The NHS says there is usually no reason why someone with albinism cannot do well in schooling, further education and employment, and with appropriate help and support, children with albinism can attend a mainstream school. It also says a child may need extra help and support at school.

The Albinism Fellowship offers a twice-yearly magazine, website resources, regional meetings around the UK and Ireland, an annual events weekend and email support. The NHS also points to the Royal National Institute of Blind People (RNIB) for information about living with low vision.

On the NHS, albinism is usually recognised at birth or in early childhood and followed up by paediatric and eye clinics, with genetic services available for counselling. Some families seek private eye or dermatology review for a second opinion, but regular NHS eye checks, low-vision services and skin checks remain central. The NHS says clinical teams pass information to a national rare disease register, and you can opt out.