Retinitis Pigmentosa Awareness Month

February is Retinitis Pigmentosa (RP) Awareness Month. It provides a time that is dedicated to raising understanding of a rare, inherited eye condition that affects thousands of people across the UK and millions worldwide.

An introduction to RP

RP is a rare genetic eye condition that affects the retina, the light-sensitive layer at the back of the eye that allows us to see. It causes a gradual loss of peripheral vision as the photoreceptor cells slowly stop working. It usually leaves central vision unaffected, but in extreme cases, patients can be left with no vision at all.

RP affects everyone differently; no two experiences are the same. In fact, one person could have very limited central vision yet the other only struggles at night despite being the same age. Don’t make assumptions on level of vision. Ask questions often people with RP are happy to answer any, instead of you assuming. You should respect an individual wish not to answer if this is the case.

Although RP is often diagnosed in childhood or early adulthood, its impact and progression can vary. For many people, it first shows up as difficulty seeing in low light or at night. Then followed by a narrowing of peripheral vision. As the condition progresses, everyday tasks such as navigating unfamiliar spaces or recognising faces can become more challenging.

There is currently no cure, but ongoing research, improved diagnosis, and supportive technologies are helping people with RP live full, independent lives. The key to raising awareness and supporting those living with RP is understanding what Retinitis Pigmentosa is and how it affects vision.

 

Diagnosis

Retinitis Pigmentosa (RP) is usually diagnosed through a combination of clinical assessment, imaging, and genetic testing. As RP is a progressive inherited condition, diagnosis can sometimes take time, especially in the early stages when symptoms may be subtle or attributed to other causes. An optometrist may first notice signs such as pigment changes in the retina during a routine eye examination. From there, referral to an ophthalmologist or a specialist retinal clinic is common for further testing.

Early diagnosis can be important for: Understanding the likely progression of the condition, Accessing appropriate support and adaptations, Identifying eligibility for clinical trials, and Connecting with specialist charities such as Retina UK.

 Elements involved in diagnosis

Eye Tests – A comprehensive eye examination plays a key role in diagnosing RP. These tests may include:

• Visual acuity testing – measures clarity of central vision.
• Dilated fundus examination – allows the clinician to examine the retina in detail. In RP, characteristic bone-spicule pigmentation, narrowing of blood vessels, and optic disc changes may be visible.
• Electroretinography (ERG) – measures how well the retina’s light-sensitive cells (rods and cones) respond to light. Reduced or absent responses can confirm retinal dysfunction typical of RP.
• Visual Field Test – A visual field test measures peripheral (side) vision. This is particularly important in RP, as peripheral vision loss is often one of the earliest and most defining features of the condition. Regular visual field testing helps monitor progression and can support applications for mobility training, benefits, or workplace adjustments.
• Optical Coherence Tomography (OCT) – OCT is a non-invasive imaging scan that provides cross-sectional images of the retina. In RP, OCT can: Show thinning of the retinal layers, Detect swelling (cystoid macular oedema), which sometimes occurs in RP, and Monitor changes in central vision over time.
• Genetic Testing – RP is an inherited condition caused by mutations in one of more than 80 identified genes. Genetic testing can: Confirm the specific gene responsible, Identify inheritance patterns, Provide information for family planning, and Determine eligibility for gene-specific clinical trials. Genetic counselling is often offered alongside testing to help individuals and families understand the results and what they mean. While not everyone chooses to undergo genetic testing, it can provide clarity and open doors to research opportunities and targeted therapies.

People with RP may develop: Tunnel vision, Patchy blind spots, and Difficulty detecting movement outside central focus. These tests together help build a clinical picture of retinal health.

Living with RP 

Living with RP looks different for everyone. Because the condition progresses at varying rates, support and adaptations often evolve over time.

• Mobility – As peripheral vision reduces, mobility can become more challenging. Difficulties may include: Navigating crowded spaces, Detecting steps or uneven surfaces, Travelling safely at night, and Crossing roads safely. Mobility training with a rehabilitation officer can build confidence and independence. This may include: Long cane training, Orientation strategies, Route planning techniques, and Use of navigation apps designed for blind and partially sighted people. Many people with RP continue to travel independently with the right support and training.
• Visual Fatigue – Visual fatigue is common in RP, especially as the eyes work harder to compensate for reduced peripheral or night vision. Visual fatigue and lead to: Eye strain, Headaches, Slower visual processing, and Increased difficulty in low light. Managing visual fatigue may involve: Adjusting lighting (brighter, even lighting reduces strain), Taking regular breaks during screen use, Using high-contrast settings, Planning demanding visual tasks earlier in the day, and Listening to your body (pacing activities can make a big difference).

Education and Workplace Adaptations

With the right adjustments, people with RP can thrive in education and employment. Common adaptations include: Enlarged text or digital materials, High-contrast print, Flexible seating to reduce glare, Extra time in exams, Screen-reading or magnification software, and Flexible working arrangements. In the UK, support may be available through schemes such as Access to Work. Early disclosure can help ensure appropriate adjustments are in place.

Assistive Technology and Support Tools

Technology has transformed independence for people living with RP. Helpful tools may include: Screen readers (e.g., VoiceOver, NVDA, JAWS), Screen magnifiers, Smartphone accessibility features, Wearable electronic travel aids, Text-to-speech apps, and Smart home voice assistants.

 

Support

Retina UK

Retina UK is a charity that supports people with inherited sight loss. The charity was originally founded in 1975, when Lynda Cantor, one of the founders, was diagnosed with RP herself and realised just how little reliable support was out there for people affected by the condition.

Over the years, Retina UK (2018-Present) has had a few different names, British Retinitis Pigmentosa Society (BRPS) (1976-2013) and RP Fighting Blindness (2013-2018). Although each of these names represent a different chapter in the charity’s history, their mission has always remained consistent -  to fund world-class medical research and to provide information, practical support and a sense of community for people living with inherited sight loss conditions.

 

Research

Pre-clinical evaluation of a micro-engineered photoreceptor patch implant for retinal repair - Professor Jane Sowden, from University College London’s (UCL) Great Ormond Street Institute of Child Health, will be tackling the challenge of restoring some vision at the later stages of sight loss. At advanced stages of retinitis pigmentosa (RP) and other inherited retinal conditions, most of the light sensitive cells (photoreceptors) across the retina have died. A potential route to restoring vision is to generate new photoreceptors from stem cells and place these at the back of the eye. To this end, Professor Sowden and her team will micro-engineer a photoreceptor cell patch to implant into the retina, creating a tiny millimetre dimension scaffold for the new cells to sit in. They are hopeful that this scaffold will aid the survival and organisation of the implanted photoreceptors. Over the course of the project, they aim to demonstrate that the patch can successfully be surgically implanted in an animal eye; they will assess its compatibility with the living tissues around it and evaluate the behaviour of the new photoreceptor cells. This is a first step towards development of a therapy for late-stage RP that could be helpful in a large proportion of cases, regardless of the underlying genetic fault.

 

Additional information

• For more information about what Retina UK do please follow this link: https://retinauk.org.uk/
• For more information about research being conducted for RP please follow this link: https://retinauk.org.uk/medical-research/