Off The Record
Siblings Share Heartbreaking Story Of Sister’s Early-Onset Dementia At 31
She’required a bit more help’ instead of having such a ‘horrendous condition,’ according to the family of a lady who died after being diagnosed with a rare form of dementia.
At the age of just 28, Gemma Illingworth of Manchester received a diagnosis of posterior cortical atrophy (PCA), an uncommon type of dementia, in 2021.
According to USCF, PCA, also known as Benson’s syndrome, is a rare visual form of Alzheimer’s disease.
“It affects areas in the back of the brain responsible for spatial perception, complex visual processing, spelling and calculation,” it states.
Gemma lost the ability to see, swallow, speak, and walk after receiving her diagnosis, and she died on November 27, 2024, at the age of 31.
In an effort to increase vital knowledge, her siblings, who recently participated in the London Marathon in her honour, have since talked candidly about her struggle with the illness.
What posterior cortical atrophy is and Gemma’s early symptoms of it
Although the Alzheimer’s Association notes it’s ‘not known whether posterior cortical atrophy is a unique disease or a possible variant form of Alzheimer’s disease’, 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.”
According to the article, the condition’s initial symptoms can “include blurred vision, difficulties reading (particularly following the lines of text while reading) and writing with non-visual aspects of language preserved, problems with depth perception, increased sensitivity to bright light or shiny surfaces, double vision, and difficulty seeing clearly in low light conditions.” These symptoms are frequently what prompt a patient to see an eye doctor.
Additional symptoms may include misrecognition of familiar individuals and objects, trouble precisely “stretching out to pick up an object”; becoming “lost when driving or strolling in familiar settings, and infrequently, visual hallucinations” in addition to coordinated movements.
Gemma’s sister, Jess, and brother, Ben, told PA Real Life that she had always been a little “ditsy”; thus, she had always struggled with many of these symptoms.
But they realised something was awry during the 2021 COVID-19 shutdown when she was unable to see or interpret her computer screen without the use of glasses, getting so bad that she had to quit her job.
How the family hope to raise awareness of posterior cortical atrophy
Despite being diagnosed with depression and anxiety, Gemma grew more solitary.
She eventually had to relocate back home and had to rely on relatives for help with cooking, taking showers, and making sure her clothing were on correctly.
Jess continued: “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.”
“There weren’t enough tell-tale signs to think that she had such a horrendous disease.”
Gemma had a brain scan in April 2021, and after a number of scans and tests, she was given a PCA diagnosis in November of the same year.
“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 added.
Gemma’s mom, Susie Illingworth, reflected, “The demise was utterly heartbreaking.”
In memory of Gemma and to increase awareness of posterior cortical atrophy, for which there is currently no treatment, Jess and Ben completed the London Marathon last month.
Ben resolved: “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.”
“They can put their arms around families like ours. They couldn’t cure Gemma, but they helped us navigate it the best way we could.”
Donations to the fundraiser can be made here.
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