Retinitis pigmentosa

Retinitis pigmentosa is a group of inherited eye disorders where there is damage to your retina. This damage causes permanent changes to your vision.

The retina is a layer of tissue that lines the inside back of your eye. It has cells that detect light and acts like the film of a camera. It captures images and ends them to the brain through the optic nerve. Our brain interprets these signals as vision. This is how you see.

In retinitis pigmentosa, the cells in your retina stop working and break down. This causes gradual vision loss. The breakdown of these cells is unpredictable — it can happen slowly or quickly.

There are many genes that can cause these cells to stop working. Therefore retinitis pigmentosa is described as a group of inherited (genetic) conditions.

The symptoms you may notice include:

• 'night blindness' — difficulty seeing at night, dusk or in low light
• difficulty adapting from light to dark, or vice versa
• loss of peripheral vision — when looking straight ahead you are less able to see things to the side and develop 'tunnel vision', which is a narrower field of vision than normal
• being sensitive to light — glare from bright lights and sunlight become problematic

Some people have poor vision for the rest of their lives, while some lose their vision completely at some point.

Retinitis pigmentosa can get worse slowly or quickly. It can start during childhood. In the most common forms of retinitis pigmentosa, symptoms first appear between childhood and 30 years of age, most often during young adulthood.

Retinitis pigmentosa is genetic and usually caused by an error in a gene that was passed down from a parent.

Your genes contain instructions that tell your body how to grow, repair and renew. When a gene is faulty, the cells do not get the instructions they need to work properly.

Your eye specialist (ophthalmologist) can diagnose you with retinitis pigmentosa by doing eye tests checking your colour vision, peripheral vision and retina.

There is no cure or standard treatment for retinitis pigmentosa. There is ongoing research into stem cell and gene therapy.

If you have retinitis pigmentosa, there are services and products that your healthcare professional may recommend for you:

• Genetic counselling at a genetic eye clinic to help you understand how retinitis pigmentosa can impact your life. They can support you in adjusting to living with or being at risk of developing retinitis pigmentosa.
• Genetic testing to check which gene is causing your condition. A small blood or saliva sample is taken and sent to a laboratory.
• Sunglasses to protect your eyes from ultraviolet light to help preserve your vision.
• Tools to help manage vision loss such as aids and technologies. This can help maintain your quality of life and independence. Visit Vision Australia for technologies and resources available to maximise vision.

Vision Australia has a range of tailored support options for your condition and age.

Macular Disease Foundation Australia provides information and guidance for people and their family members, friends and carers who are living with retinitis pigmentosa.

Visit Retina Australia to learn more about retinitis pigmentosa.

Learn more about how your eye works on our Healthdirect 'eyes' page.

Read 5 things you should know about Aboriginal eye health — information for members of the Aboriginal and/or Torres Strait Islander community.