Retinitis Pigmentosa (RP)
A group of inherited retinal diseases that cause progressive degeneration of the light-sensitive cells of the retina, known as photoreceptors.
Understanding Retinitis Pigmentosa
Retinitis Pigmentosa (RP) is a group of inherited retinal diseases characterised by the progressive degeneration of photoreceptor cells in the retina, the light-sensitive layer at the back of the eye that enables us to see.
RP primarily affects rod cells, responsible for peripheral (side) and low-light vision, and may later affect cone cells, which support central vision, colour perception and visual detail. Changes in specific genes disrupt the normal function and survival of these cells, leading to progressive vision loss.
RP is one of the most common inherited retinal diseases and can occur as an isolated condition or as part of a syndrome affecting other parts of the body. The onset and progression of vision loss vary considerably between individuals, even among those with the same diagnosis.
Although there is currently no cure for most forms of RP, advances in research are creating new opportunities for diagnosis, treatment and support. Retina International works with patients, researchers, clinicians and organisations worldwide to advance understanding, accelerate research and improve outcomes for people living with RP and other inherited retinal diseases.
80+ genes
More than 80 genes have been associated with forms of Retinitis Pigmentosa, reflecting its significant genetic diversity.
3 main inheritance patterns
RP can be inherited through autosomal dominant, autosomal recessive, or X-linked patterns.
Rod cells first
RP primarily affects rod photoreceptors, often causing early difficulty seeing in low light and loss of peripheral vision, before cone cells may become affected.
How RP can affect vision
Difficulty seeing in low light
Many people with RP first notice difficulty adapting to darkness or seeing in dim environments.
Loss of peripheral vision
Progressive loss of side vision may create a “tunnel vision” effect.
Difficulty navigating environments
Reduced peripheral vision can affect mobility, especially in unfamiliar places or crowded environments.
Changes in central vision
In some forms of RP, central vision may become affected over time, impacting reading, recognising faces, and seeing fine detail.
Colour vision changes
Some people may experience reduced ability to distinguish colours.
Identifying RP
Eye examination
An eye care professional (an optometrist or an ophthalmologist) will examine the retina and assess changes associated with RP.
Visual field testing
Visual field testing measures how much of your surroundings you can see while looking straight ahead and helps track changes in your vision over time.
Retinal imaging
Special scans (Optical coherence tomography) and photographs ( fundus photography) of the retina help doctors see changes at the back of the eye.
Electroretinography (ERG)
This test measures how well the cells in your retina respond to light and helps assess retinal function.
Genetic testing
A genetic test can identify the gene change causing RP. The results can help explain how the condition is inherited, guide care, and determine whether you may be eligible for research studies or clinical trials.
Current approaches to managing RP
Approved treatments
Certain genetic forms of IRDs now have approved treatments, and genetic testing can help identify eligibility for available therapies, clinical trials, and emerging gene-based treatments. Research continues to expand treatment options worldwide.
Low vision support
Specialist low vision services help people make the most of their remaining sight through tools and training, including handheld and electronic magnifiers, reading aids, telescopes for distance viewing, glare-control filters, enhanced lighting, and adaptive daily-living strategies.
Assistive technologies
Technology can support independence through screen readers, screen magnification software, OCR text-reading apps, voice assistants, smartphone accessibility features, navigation tools, and AI-powered visual assistance devices.
Rehabilitation services
Vision rehabilitation programmes can provide orientation and mobility training, occupational therapy, workplace and home adaptations, independent living skills, and emotional support to help people remain confident and active.Useful resources: Resources and Links for People with Low Vision – American Academy of Ophthalmology Retinitis Pigmentosa | National Eye Institute.
Psychological support
Psychological support can help you to cope with the emotional impact of progressive vision loss, build resilience, maintain independence, and improve overall well-being and quality of life.
Supporting independence and quality of life
Living with RP can involve adapting to changing vision and navigating challenges in education, employment, mobility, and daily activities.
Many people living with RP develop strategies and use available support to continue participating fully in their communities.
Support may include:
- Connecting with patient organisations
- Accessing low vision services
- Using assistive technology
- Planning for changes in vision
- Participating in research opportunities
- Connecting with others with lived experience
The experiences of people living with RP are central to shaping research priorities, healthcare approaches, and advocacy efforts.
Advancing the future of RP treatment
Gene therapy
Gene therapy delivers functional copies of genes or modifies genetic changes to address the underlying genetic cause of RP.
Retinal cell therapies
Retinal cell therapies explore the replacement or regeneration of damaged retinal cells to help restore visual function.
Retinal prostheses and vision restoration technologies
Retinal prostheses and vision restoration technologies use innovative devices and technologies to stimulate remaining retinal pathways and support vision.
Natural history studies and registries
Natural history studies and registries collect long-term data to better understand how RP progresses and to guide future treatment development.
Clinical trials
Clinical trials evaluate the safety and effectiveness of new therapies, medicines, and technologies for people living with RP.
Information and community support
Take the Next Step
Retinitis Pigmentosa affects each person differently, but no one should have to navigate vision loss alone.
Through research, advocacy, and global collaboration, the retinal community is working towards a future where inherited retinal diseases are better understood, better treated, and where everyone affected has access to the support they need.
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