Most people only start paying attention to their eyesight when something begins to feel different, such as struggling to see in the dark or experiencing a gradual loss of peripheral vision. These changes can develop quietly and become increasingly difficult to ignore, particularly for people living with retinitis pigmentosa (RP), a rare group of inherited retinal conditions that can cause progressive vision loss.
According to Dr Tara Mary George and Dr Daphne Teh, Consultant Ophthalmologists and Medical Retina and Uveitis Specialists at Sunway Medical Centre, Sunway City (SMC), RP can present and progress differently from one individual to another. While there is currently no cure for the condition, early diagnosis and appropriate care can help patients manage their condition, maximise their remaining vision and maintain their quality of life.
RP is not a single disease but a group of inherited retinal disorders in which the retina does not function normally. The retina is the light-sensitive layer at the back of the eye that converts light into signals sent to the brain, allowing us to see. In RP, genetic mutations disrupt this process, particularly affecting rod cells that are responsible for vision in low-light conditions and peripheral vision.
Because RP typically develops gradually, its early symptoms can easily be overlooked or mistaken for ordinary changes in eyesight. One of the most common early signs is difficulty adapting to dim environments. A person may take significantly longer to see after entering a dark room or cinema, while others may struggle to navigate safely when lighting is poor. As the condition progresses, peripheral vision may narrow, resulting in tunnel vision and making patients more likely to bump into objects around them.
Although RP has a genetic basis, its impact varies considerably between individuals. Some people may develop symptoms during childhood, while others may only notice changes in their vision later in adulthood. The timing and severity can depend on the specific genetic mutation involved. When more critical parts of the retina are affected, symptoms may appear earlier and be more severe, while milder forms may not become apparent until later in life.
The inheritance pattern can also vary because RP can result from different genetic causes. Some cases may occur within families, while others may arise without a known family history. This complexity is why RP is often described as an inherited retinal dystrophy. Given these variations, early detection and timely care are important in helping patients understand their condition, prepare for potential changes and take appropriate steps to manage its progression.
Diagnosing RP involves more than a routine eye examination. Assessment typically begins with a detailed medical history, followed by specialised tests such as visual field assessments and optical coherence tomography (OCT) scans. These tests can help identify changes in vision and retinal structure. In some cases, an electroretinogram (ERG) may also be performed to assess how the retina responds to light, although access to ERG testing remains limited in Malaysia.
Individuals experiencing persistent difficulty seeing at night or noticing changes in their peripheral vision should therefore seek an assessment from an eye specialist rather than simply updating their glasses. Early evaluation can help identify the underlying cause and ensure that appropriate monitoring and support are provided.
While an RP diagnosis can understandably feel overwhelming, current care focuses on helping patients adapt to changes in vision and maintain independence. According to Dr Daphne, management involves proactive and supportive care, including regular monitoring to track disease progression and identify or manage complications that may develop. Follow-up care may include vision assessments, retinal imaging and treatment for related conditions such as cataracts or macular swelling.
Practical adjustments at home and in daily routines can also improve safety and confidence. These may include improving lighting around the home, reducing night-time driving and organising living spaces to create clearer and safer pathways. Early referral to low-vision rehabilitation services is another important aspect of care, as learning to adapt to vision changes earlier can help patients cope more effectively over the long term.
Technology is also playing an increasingly important role in helping people with RP remain independent. Digital magnifiers, text-to-speech software and smartphone applications can assist with reading, recognising objects and completing everyday tasks. Artificial intelligence (AI)-powered applications can also describe surroundings or read text aloud in real time, providing potentially valuable assistance when introduced early in the course of vision loss.
Beyond medical care and assistive technology, emotional and social support are equally important. An RP diagnosis does not necessarily mean losing independence or giving up on personal ambitions. With the right support and adaptations, many people living with the condition can continue their education, pursue careers and lead fulfilling lives.
For newly diagnosed patients and their families, uncertainty can often be one of the most difficult aspects of the condition. Ongoing research, including developments in gene therapy, is creating new possibilities for the future. However, raising awareness of early symptoms and ensuring patients receive appropriate assessment, care and support remain essential.
Understanding the condition, preparing for changes and seeking the right support can make a meaningful difference in living with RP. By taking things one step at a time, accessing appropriate eye care and exploring rehabilitation and assistive technologies, patients can continue working towards greater confidence, independence and quality of life.
