Further information on RPcan be found at:

RP Fighting Blindness

RNIB

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

Retinitis Pigmentosa

(RP)

What is it?

What are its effects?

What can we do to help?

What is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is the name given to a range ofgenetic visual conditions that involve damage to the retina (the layer of cells at the back of the eye that ‘capture’ light). The precise symptoms and severity of RP depend on the specific genes involved in any individual case. RP is a progressive condition although the rate of visual degeneration is highly variable. In most cases, the peripheral cells of the retina are affected first and central cells are affected later.This gradual restriction in peripheral vision is often referred to as ‘tunnel vision’.

In some less common forms of RP, central vision is affected first, spreading to the periphery over time.

RP commonly causes difficulty seeing in dim or dark environments (night-blindness). Some people with RP also experience photophobia (discomfort or pain when in bright light).

RP can occur as an isolated visual condition or alongside conditions affecting other parts of the body (referred to as RP syndromes). Examples include Ushers and Alstrӧm Syndromes.

Possible impacts of RP:

  • Levels of visual functioning may fluctuate according to the specific lighting conditions at any time and in any place.
  • Reading printed text may be slow or impossible owing to reduced visual field.
  • Physical tiredness may be encountered as head and eye movements increase with decreasing visual field.
  • Social cues such as facial expression and body language may be missed.
  • Information presented on noticeboards, display boards and sign-posts may be missed.
  • Access to visual information, text and images on the computer may be impaired.
  • Safety may be compromised as steps, slopes and obstacles may not be seen.
  • Items such as people, balls and traffic may not been seen when approaching from the side.
  • Emotional issues may arise through coming to terms with the degenerative nature of RP and adjusting to reduced levels of vision.

What can we do to help?

  • Take time to understand the specific, nature of your child’s visual impairment, including detailed understanding of the child’s field of vision and likely long-term prognosis.
  • Provide emotional support and/or counselling to help with coming to terms with a degenerative condition.
  • Use blinds/curtains/light switches to control the amount of light entering a room.
  • Provide individual task lamps and/or a torch when working or moving in dim lighting.
  • Understand that visual tasks can be very tiring and allow time for rest and relaxation.
  • Allow a person with RP time to explore new environments at their own pace and, wherever possible, without distraction.
  • Ensure printed texts are available in the reader’s preferred format (print, Braille and/or or audio).
  • Support use of low vision aids such as white canes, bell balls and specialist software.
  • Introduce yourself when addressing a person with RP.
  • Address any person with RP by name, particularly when in a group situation.
  • Provide audio description of events occurring at a distance.
  • Ask what is most/least helpful in terms of support!