What began as occasional clumsiness and trouble reading became a nightmare diagnosis for Gemma Illingworth – posterior cortical atrophy, a rare dementia typically striking people decades older. At 28, Gemma was in the prime of her life when the disease began stealing her abilities one by one.
Her siblings recall how easy it was to explain away early symptoms. Gemma had always been a bit absent-minded – surely her worsening vision just needed new glasses? But when lockdown hit and she couldn’t work on her computer, the truth became undeniable. “We thought she needed support, not that she was ill,” sister Jess reflects with painful hindsight.
PCA, a visual variant of Alzheimer’s, disrupts spatial awareness and complex visual processing. Patients often bump into objects, struggle with depth perception, and eventually lose the ability to perform basic tasks. For Gemma, this meant giving up independence at an age when most are building careers and families.
Before her passing at 31, Gemma’s family vowed to turn their heartbreak into hope for others. Brother Ben and sister Jess recently ran the London Marathon to fund Rare Dementia Support, emphasizing that dementia can strike shockingly young. Their story reminds us all to take cognitive changes seriously, no matter a person’s age.
