Further information on albinism can be found at:

The Albinism Fellowship:

Scottish Sensory Service:

March 2016

How to contact us:

Address: SENSS VI Team,

The Wheatley Centre, Littleworth Rd, Wheatley, Oxon. OX33 1PH

Tel: 01865 456711

Email:

Special Educational Needs Support Service (Visual Impairment)

Information leaflet

Albinism

What is it?

What are its effects?

What can we do to help?

What is Albinism?

Albinism is a genetic condition that results ina reduced amount of pigmentation (melanin) being produced by the body.

Visual impairmentis associated with albinism for two main reasons:

  • A reduction in pigmentation of the iris (the coloured part of the eye) results in difficulty controlling the amount of light entering the eye.
  • Development of the retina (the part of the eye that ‘receives’ and ‘fixes’ images) and the optic nerves can beaffectedso distorted and/or impartial images are sent to the brain.

There are two main types of albinism:

  • Oculocutaneous (in which levels of pigmentation are reduced in the skin, hair and eyes)
  • Ocular (in which it is only the eyes that are affected)

Visual difficulties experienced by those with albinism often include:

  • reduced visual acuity (clarity of vision)
  • nystagmus (‘wobbly’ eyes)
  • strabismus (squint)
  • photophobia (discomfort or pain in bright light)
  • reduced binocular vision (affecting depth perception)

Possible impacts of an albinism-related VI:

  • Sustaining visual concentration can be extremely tiring.
  • Reading printed text may be difficult/impossible if the text is too small.
  • Maintaining eye contact may be difficult or impossible.
  • Identification and/or observation of items at a distance can be significantly reduced.
  • Recognition of people from a distance may be difficult.
  • Social cues such as facial expression may be missed.
  • Access to information presented on noticeboards, display boards and sign-posts may be reduced.
  • Access to information, text and images on the computer may be impaired.
  • Vision may be further reduced when in areas of bright light.
  • Safety may be compromised as steps, slopes and obstacles may not be seen or may not be judged accurately.
  • Thoseexperiencing nystagmus may adopt an unusual head posture as they select the position in which the effects of this are minimised. This can result in neck strain and headaches.

What can we do to help?

  • Allow plenty of time for the completion of visual tasks.
  • Understand that visual tasks can be very tiring and allow time for rest and relaxation.
  • Allow a person with albinism to explore items and notices at a distance that is most comfortable to them.
  • Ensure printed texts are accessible by modifying the font size or providing audio or Braille access.
  • Support use of low vision aids such as magnifiers, writing slopes, white canes, bell balls and specialist software.
  • Introduce yourself when addressing a person with albinism.
  • Address any person with albinism by name, particularly when in a group situation.
  • Ensure diagrams, pictures and texts are presented on a high-contrast background (eg black on white) or in a tactile format.
  • Support any physiotherapy, relaxation and/or massage that may reduce neck strain.
  • Provide audio description of events occurring at a distance.
  • Ask what is most/least helpful in terms of support!