One big challenge people with Albinism, or the parents of children with the condition face, is getting their head around the seemingly complex clinical terminology used to describe things.
Sometimes the medical words used can seem hard to understand and cause anxiety or false expectations. Every person with Albinism is an individual with capacity and insights according to their first hand experiences. There is no magic one shoe fits all remedy’….. Parents of children with Albinism and adults with the condition should never hesitate to ask Health Professionals for an explanation which is clear and understandable. Eye Care Professionals aim to give the best possible outcomes for people with Albinism. Long term Professional Eye Care is highly desired because it enables best practical outcomes for the person with albinism.
People with Albinism may experience the following visual difficulties:
Reduced Visual Acuity.
Light sensitivity (Photophobia)
Rapid eye movements (Nystagmus)
Misaligned eyes (Strabismus)
Its important to seek competent professional advice about eye care requirements.
Albinism is an inherited condition. It affects the eyes and skin of some individuals, and only the eyes of others. It results from the body’s inability to produce normal amounts of a pigment called melanin.
There are different types of albinism?
Oculocutaneous albinism – both the skin and eyes are affected and can present with varying degrees of pigment. Some children have white hair, little or no pigment in the skin, pale coloured eyes and significant vision impairment. Others with more pigment may have red-brown hair, some skin colour, blue or brown eyes and less severe vision impairment.
Ocular albinism, – children have vision impairment but the hair and skin are normal or near-normal in colour.
Many parents are anxious to know just how albinism will affect their child’s vision? For both types of albinism, effects on the child’s vision include:
Macular hypoplasia – an abnormality in the retina resulting in decreased clarity of vision
Nystagmus – a rhythmical involuntary flicker of the eyes
Photophobia – an intolerance to bright light due to reduced or absent pigment in the iris
Refractive errors (short or long sight or astigmatism)
Strabismus (‘squint’ or ‘turned eye’)
Visual pathway anomalies may also be present, particularly problems with depth perception
What other difficulties are caused by albinism?
Skin sensitivity – the effects of albinism on the child’s skin will depend on the amount of pigment present, but all children with albinism are prone to sunburn and skin problems and will need additional protection.
What assistance do children with albinism need?
Children with albinism may need some form of visual aid, depending on the type and extent of the visual condition. Glasses or contact lenses can correct for short or long sightedness or astigmatism.
Older children may need a monocular for distance viewing and some may need large print or a magnifier for reading.
All children with albinism benefit from sunglasses and hats to reduce glare and prevent sunburn.
We attach a .pdf file discussing “Eye Health For Children” and “Regular Eye Examinations”. albinism-awarness-edu
This video produced in the UK offers a realistic perspective with some helpful answers for parents :-