World Retina Day 2023: Spotlight on Retinitis Pigmentosa

24 September 23

written by:

Josie Robson

(more articles)

Today is World Retina Day. Retinitis pigmentosa (RP) is a group of disorders that produce a gradual loss of vision. It affects approximately one in 5000 worldwide. Learn about it in four minutes with our quick guide.

Retinitis pigmentosa is caused by the gradual decline and loss of light-sensing cells called photoreceptors in the retina, which are vital for healthy eyesight.

But how much do you know about the causes, symptoms and impact of Retinitis pigmentosa? Here are ten facts you might not know about the condition.

1. Retinitis pigmentosa is not a single condition

Though commonly referred to as a ‘condition’, Retinitis Pigmentosa describes a group of closely related inherited eye conditions that affect the retina (the specialised light-sensitive tissue at the back of the eye).

A person’s sight loss usually happens gradually, over many years – and sometimes eventually leads to registered blindness.

Various scans of an eye presented on a computer screen

2. Retinitis Pigmentosa is the most common inherited eye condition

Retinitis pigmentosa is the most common inherited eye condition, affecting around one in 4,000 people in the UK.

3. The common symptoms of Retinitis Pigmentosa can be varied

While there’s no universal experience for people living with Retinitis Pigmentosa, symptoms can include:

  • Loss of night vision, or ‘night blindness’ (parents may notice their children have issues moving around in the dark) or finding it takes longer to adjust to low light levels.
  • Loss of peripheral or side vision leading to tunnel vision as peripheral sight becomes more limited.
  • Changes to colour vision.
  • Sensitivity to bright light.
  • Difficulty seeing fine detail when looking straight ahead can present in advanced RP.

4. Retinitis Pigmentosa tends to present in young people.

Symptoms of retinitis pigmentosa tend to appear during childhood or early adulthood – but in rare cases, they can start much later. RP is a progressive condition, which means that a person’s sight loss will continue to worsen as they age.

5. Retinitis Pigmentosa progresses unpredictably

Changes to the sight of someone with RP can happen irregularly, with rapid vision losses over a short period, followed by long periods of no further changes before another period of deterioration. 

As such, it can be difficult to predict the severity and speed of how an individual’s sight loss will progress; it varies hugely from person to person.

6. An optometrist or optician can check for signs of Retinitis Pigmentosa by looking at the back of your eye.

An optometrist (or optician) will examine the back of a person’s eye, using a special instrument, to look for signs of RP. They may also carry out a field of vision test to assess if a person has any changes to their peripheral vision. If they have any concerns, they may refer the person to an ophthalmologist (hospital eye doctor) for more tests.

Once referred to a hospital, someone with suspected RP may undergo Optical Coherence Tomography (OCT), autofluorescence imaging, a visual field test, colour vision tests, an electroretinogram (ERG) and potentially genetic testing.

7. Retinitis Pigmentosa can be part of a broader inherited syndrome.

Though most people with Retinitis Pigmentosa will only have sight loss, it can sometimes occur as part of a broader inherited syndrome that affects other parts of the body. Examples of this include Usher, Bardet-Biedl (BBS) and Alström syndromes and Refsum disease, which all cause RP-like sight loss along with other health conditions.

 8. We’re unpicking the genetics behind Retinitis Pigmentosa

So far, 280 genes have been identified as containing the instructions for making proteins crucial for the retina's health, though there could be more. When these genes contain a mutation that interferes with the protein’s function, it results in an inherited retinal dystrophy like retinitis pigmentosa. These gene mutations can be passed down through families.

Read more about genetics >

Research we're funding into RP >

9. There is currently no known cure for RP

Unfortunately, there is no known cure or effective treatment that can stop the progression of RP. However, the development of gene replacement therapies and other potential new treatments offer hope for patients in the future.

There is much ongoing research into finding the remaining genes that cause retinitis pigmentosa, how genetic changes cause damage to the photoreceptors and developing new treatments that can slow down or reverse sight loss.

Find out more about the research we’re helping to fund >

10. Regular eye tests can help spot eye conditions early

We should all have our eyes tested every two years, even if you think your vision is fine. An eye test can spot some eye conditions; if caught early, treatment may prevent further deterioration.