The WA Retinitis Pigmentosa Foundation Inc.

Living with Retinitis Pigmentosa

Slow loss of sight is a very difficult thing to live with, especially as you may not receive the immediate understanding offered to the totally blind.  Indeed, many people will not believe that you have a problem because you have no apparent signs of visual impairment.  The first and hardest step towards living positively with a visual impairment is accepting it.  For the RP sufferer, that means knowing the extent and limits of your vision and using intelligently the visual clues you still receive.  A normally sighted person must do this too in certain circumstances.

The driver who plunges suddenly into a fog has two alternatives – he can decide that he can’t see a thing, panic and stop, which might cause an accident, or he can see (even if it is only the nearside kerb) and move cautiously down the road.  The RP sufferer too can panic or move on down the road.  Accepting that you have a visual impairment is never easy.  You may go through times of despair and of feeling resentful and bewildered.  All these reactions are quite understandable, especially as the very nature of RP makes adjustment difficult, but the way in which you deal with RP will determine the type of life you and your family will share from day to day.

Try to ignore it and you will suffer constant reminders that it is there.  Write yourself off as totally incapable and you will be missing out on many of life’s enriching experiences.  Tackle each new problem steadily as it arises, using clues from all your senses and you will find that you can live more positively with RP.

Everyone is Different

RP can manifest itself in different ways.  For some, visual loss is slow and there will be only slight loss, over perhaps ten years.  Others have periods of rapid loss, often with years in between of no apparent decline.  Still others have been aware of impaired vision from childhood or teens, when they had difficulty with ball games, especially at dusk.  Some will lose peripheral sight but will remain near-perfect central vision, while others will remain side vision but will have very blurred or otherwise defective central vision.