Gemma Illingworth, from Manchester, was just 28 when she was diagnosed with Posterior Cortical Atrophy (PCA), a rare and progressive neurological condition.
PCA is a degenerative disorder that damages the part of the brain responsible for processing visual information. As brain cells gradually deteriorate, individuals experience increasing difficulty interpreting what they see. Over time, additional symptoms — including memory loss — may develop.
Gemma eventually lost both her sight and her ability to live independently. Her brother, Ben, described her as having been “ditsy” since childhood, recalling that she often struggled with coordination, direction, telling the time, and certain visual tasks. At the time, however, these traits did not raise concerns about her health.
As she grew older, her difficulties became more pronounced. She began struggling to process information on her computer screen, ultimately forcing her to stop working. After undergoing a series of neurological assessments, she received the life-changing diagnosis of dementia.
Her condition progressed rapidly. In time, she lost the ability to carry out basic daily tasks, including feeding herself, swallowing, speaking, and walking.
“She didn’t fully understand what was happening,” Ben told The Sun. “She believed she could still live a normal life, but she couldn’t. Before we realised how serious it was, she was no longer able to live independently. Once she was diagnosed, we knew the disease would progress — we just didn’t expect it to happen so quickly.”
What is Posterior Cortical Atrophy?
Posterior cortical atrophy is a rare, progressive neurodegenerative disorder that primarily affects the brain’s visual processing centre. It is often linked to underlying conditions such as Alzheimer’s disease and Lewy body dementia.
Like these conditions, there is currently no cure for PCA. Treatment focuses on identifying the underlying cause and managing symptoms through medication and supportive therapies.
Signs and Symptoms of Posterior Cortical Atrophy
Although PCA most commonly begins in a person’s 50s or 60s, it can also develop earlier, sometimes as early as the 30s. The condition affects the posterior cerebral cortex — including the parietal and occipital lobes — leading to progressive loss of brain cells in this region.
As the brain tissue shrinks, individuals may experience:
- Difficulty reading, often losing their place as lines of text appear to shift
- Problems judging distances, such as navigating stairs or parking a car
- Confusion with directions, including difficulty distinguishing right from left
- Trouble recognising faces, objects, or familiar places
- Frequently bumping into furniture or doorways due to impaired spatial awareness
- Difficulty understanding numbers
- Challenges using everyday tools and household appliances
- Anxiety and emotional distress as symptoms worsen
PCA is a devastating condition, particularly because it can affect people at a relatively young age, gradually taking away their independence and ability to interpret the world around them.
