Albinism

Albinism is a rare, non-contagious, genetically inherited condition occurring in both genders regardless of ethnicity, in all countries of the world. Both the father and mother must carry the gene for it to be passed on even if they do not have albinism themselves. The condition results in a lack of pigmentation in the hair, skin and eyes, causing vulnerability to sun exposure and bright light. Albinism occurs because people have inherited genes that do not produce the usual amounts of a pigment called melanin. Almost all people with albinism are visually impaired, with the majority being classified as “legally blind”.

Peter Ash, founder of Under the Same Sun  holds Albino boy in Tanzania


Peter Ash (L), founder of non-profit
Under The Same Sun, holds an albino boy in Mitindo Primary School in Nyawilimilwa, Mwanza region of Tanzania, on November 21, 2009. The organization lobbies for the protection of the rights of people with albinism and for education about the genetic condition. By Katrina Manson/Reuters

Photo source: Newsweek

Albinism is found in all populations but has a relatively higher frequency throughout sub-Saharan Africa. While numbers vary, in North America and Europe it is estimated that 1 in every 20,000 people have some form of albinism.  In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 1,400 people being affected. It is a major cause of low vision at birth.

There are two main types of albinism: oculocutaneous albinism which involves the eyes, hair and skin and ocular albinism which involves primarily the eyes.

The eyes of people with oculocutaneous albinism appear pale blue or blue/grey and most will have a significant visual impairment (a partial sight). People with ocular albinism will generally not display a significantly reduced level of pigmentation although the eye problems associated with albinism will be present.

Effects

Albinism generally affects the eyes in several ways:

·        Nystagmus: This is an involuntary movement of the eyes, usually from side to side, but sometimes also up and down.  The brain does however adapt to the movement and so whilst the eyes might move, the image a person with albinism is seeing does not.

·        Strabismus: This means that there is a muscle imbalance within the eyes causing the person to squint and use each eye separately rather than together.  Thus, people with albinism do not have binocular vision (the ability to use both eyes at the same time).  However, most people adapt and so there is no sense of double vision.

·        Photophobia: Most people with albinism will be very uncomfortable in bright light due to an absence of pigment in the eyes.  Too much light can enter the eye creating glare and discomfort. 

·        Far-sightedness or nearsightedness: People with albinism may also be far sighted or near sighted and can also have stigmatism.  This is where the surface of the eye is not spherical resulting in a distortion in the image seen by the person. These aspects of the condition can often be helped by wearing strong prescription reading glasses, contact lenses, bifocals and bioptics (glasses which have small telescopes mounted on).

These eye problems result from abnormal development of the eye because of lack of pigment.  The retina – the surface inside the eye that receives light – does not develop properly before birth and in infancy, so that vision is not sharp even with corrective lenses.  The nerve signals from the retina to the brain do not follow the usual nerve routes.  The iris – the coloured area in the centre of the eye – does not have enough pigment to screen out stray light coming into the eye.  Light normally enters the eye through the pupil – the dark opening in the centre of the iris – but in albinism, light can pass through the iris as well.

Vision Aids

Many people with Albinism are able to benefit from a wide variety of low vision aids (LVAs), such as hand-held magnifiers for reading small print; monocular or telescope for viewing distant objects; and a range of electronic aids, such as video magnifiers (also know as closed circuit televisions - CCTVs).  

Most people with Albinism are also able to access computers with the help of a large monitor and/or software which enlarges the display or converts it into speech.  They are encouraged to try out different types of tinted lenses to see which offers the most comfortable level of protection from glare.

It is essential that children with Albinism are seen by an Ophthalmologist (eye specialist) regularly so that they have appropriate eye glasses or contact lens prescription.

Note: There is a mistaken belief that children with albinism will go blind in the future. This is sometimes used as a justification for teaching them Braille at school. This is not recommended, however, as albinism is not a progressive condition and does not lead to blindness.

Source: 

Under The Same Sun (UTSS)

Albinism Fellowship 

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