Retinitis Pigmentosa

Retinitis Pigmentosa

Understanding the causes, symptoms, and support available

Retinitis Pigmentosa (RP) is a group of rare genetic eye conditions that affect the retina, leading to a gradual loss of vision over time. It typically begins by affecting night vision and peripheral (side) vision, and may eventually impact central vision. While RP progresses differently for each person, support and adaptations can help you maintain independence and quality of life.

What is Retinitis Pigmentosa?

Retinitis Pigmentosa refers to a group of inherited conditions that cause the light-sensitive cells in the retina to slowly stop working. These cells, known as rods and cones, are essential for vision in different lighting conditions.

RP often starts by affecting the rods, which are responsible for vision in low light and peripheral vision. Over time, the cones, which control central and colour vision, may also be affected. The condition usually develops gradually and can vary widely in how quickly it progresses.

Symptoms of Retinitis Pigmentosa

Symptoms often begin in childhood or early adulthood and develop slowly. They may include:

Difficulty seeing in low light or at night (night blindness)
Gradual loss of peripheral (side) vision, often described as “tunnel vision”
Trouble navigating in dim environments
Sensitivity to bright light
Difficulty recognising faces (in later stages)

As the condition progresses, central vision may also become affected.

What causes Retinitis Pigmentosa?

Retinitis Pigmentosa is caused by changes (mutations) in genes that are important for the function of the retina. These genetic changes are usually inherited from one or both parents.

Different inheritance patterns exist, including:

Autosomal dominant
Autosomal recessive
X-linked inheritance

Because RP is genetic, it may affect multiple members of the same family, although symptoms and severity can vary.

How is Retinitis Pigmentosa treated?

There is currently no cure for Retinitis Pigmentosa, but research is ongoing and treatments continue to develop. Management focuses on slowing progression where possible and supporting vision.

Options may include:

Regular monitoring by an eye specialist
Use of visual aids and assistive technology
Orientation and mobility training
Genetic counselling for individuals and families

Some people may be eligible for emerging treatments or clinical trials, depending on the type of RP they have.

Living with Retinitis Pigmentosa

Living with RP can bring gradual changes to your vision, which may affect daily activities over time. Early support and planning can make a big difference. Many people find it helpful to use mobility training, assistive devices, and adaptations at home and work.

Emotional support is also important, as adjusting to long-term vision changes can be challenging. Connecting with support organisations and others with similar experiences can be reassuring and empowering.

When to seek help

You should seek advice if you notice persistent difficulty seeing at night, reduced peripheral vision, or a family history of inherited eye conditions. Early diagnosis can help you access the right support and plan for the future.

Support is available

A diagnosis of Retinitis Pigmentosa can feel uncertain, but you are not alone. Support is available to help you understand your condition, adapt to changes in your vision, and maintain your independence. Our team can provide practical guidance, emotional support, and information tailored to your needs.

Frequently asked questions
Does Retinitis Pigmentosa cause blindness?

RP can lead to significant vision loss over time, but the extent varies from person to person. Many people retain some level of useful vision for many years.

Is Retinitis Pigmentosa painful?

No, RP is not painful. It affects vision gradually without causing physical discomfort.

Can RP be cured?

There is currently no cure, but research into treatments such as gene therapy is ongoing and showing promise.