Back in 2021, Gemma Illingworth, who lived in Manchester, was told she had a rare form of dementia called posterior cortical atrophy (PCA). She was only 28 years old when she received the diagnosis.
According to UCSF, PCA also referred to as Benson’s syndrome—is considered a rare visual variant of Alzheimer’s disease.
After Gemma was diagnosed, she gradually lost many abilities – she could no longer see, speak, swallow, or even walk. Sadly, she passed away on November 27, 2024, at just 31 years old.
Her siblings recently completed the London Marathon in her memory. They’ve opened up about what Gemma went through in hopes of raising more awareness about the condition.
What posterior cortical atrophy is and Gemma’s early symptoms of it
While the Alzheimer’s Association points out that it’s still unclear whether posterior cortical atrophy is its own disease or simply a variation of Alzheimer’s, UCSF states: “In the vast majority of PCA cases, the underlying cause is Alzheimer’s disease, and the brain tissue at autopsy shows an abnormal accumulation of the proteins amyloid and tau that form the plaques and tangles seen in Alzheimer’s disease.”
Some of the early warning signs include blurry vision, difficulty tracking lines while reading, and problems with writing though people usually retain the non-visual aspects of language. Other symptoms might involve trouble with depth perception, being extra sensitive to glare or shiny surfaces, seeing double, and struggling in dim lighting. These types of symptoms often lead people to first visit an eye specialist.
As the condition progresses, some may also experience trouble reaching for things accurately, getting lost in places they’ve been to before, and even mistaking familiar faces or objects. In rare cases, people can experience visual hallucinations. Coordination and movement can also be affected.
But during the COVID-19 lockdown in 2021, things took a turn. She found herself unable to see or make sense of her computer screen even with glasses.
Eventually, her vision issues became so severe that she had to stop working. That’s when they realized something serious was going on.
How the family hope to raise awareness of posterior cortical atrophy
Initially, Gemma was signed off work due to anxiety and depression. But over time, she became more withdrawn and started to isolate herself.
As things got worse, she needed her family’s help with basic daily tasks like taking a shower, preparing meals, and even making sure her clothes were on properly. Eventually, she moved back home for full-time support.
Jess shared: “Maybe we were slightly in denial, I don’t really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support.”
In April 2021, Gemma had a brain scan. After a series of tests over the next few months, doctors confirmed the diagnosis of PCA that November.
“Once she had the diagnosis, it was really only going to go one way. We didn’t know it was going to be that quick,” Jess said, reflecting on how quickly the disease progressed after they finally understood what was happening.
Just last month, Jess and Ben honored their sister’s memory by running the London Marathon. Their goal was to shine a light on PCA—a condition that currently has no cure.
Ben added with determination: “We’re trying to raise as much money for RDS (Rare Dementia Support) so that they can try and prevent stuff like this happening again.”
You can donate to the fundraiser here.