birmingham Woman, 32, Faces Early-Onset Dementia – The Same Condition That took Her Mother
BIRMINGHAM, UK – Liv Heeney, a 32-year-old woman from Birmingham, is confronting a devastating diagnosis: frontotemporal dementia (FTD), a rare and aggressive form of dementia that claimed the life of her mother. After noticing subtle changes in her cognition, Heeney underwent genetic testing in January 2023, revealing she carries a mutation that will inevitably lead to the same condition.Her story underscores the critical need to dispel misconceptions about dementia and increase funding for research into younger-onset cases.
Heeney’s diagnosis is particularly poignant given her family history and future aspirations.Knowing the progression of the disease, she is persistent to live life to the fullest and raise awareness about FTD, which often presents differently than Alzheimer’s and disproportionately impacts those under 65. She is actively fundraising for alzheimer’s Research UK, recognizing the limited time she may have with future children – potentially only 15 years if she were to have them today.
Heeney’s journey began with a proactive decision to understand her risk. “It’s just not the case that [dementia] is a natural part of ageing,” she explained. “It’s a disease, it’s physical changes to your brain… a disease just like cancer and Aids, even like Covid – it’s a physical thing in the body.” This understanding prompted her to seek genetic testing, confirming her fears.
Frontotemporal dementia is characterized by progressive changes in personality, behavior, and language. Unlike Alzheimer’s, which primarily affects memory, FTD often manifests as inappropriate social behavior, compulsive actions, or difficulty with interaction. The condition is often misdiagnosed or dismissed as a personality quirk, leading to delays in treatment and support.
Despite the grim prognosis, Heeney remains resolute. She is organizing a fundraising night in Birmingham next weekend to support Alzheimer’s Research UK, hoping to contribute to breakthroughs that could slow the progression of the disease or, ultimately, find a cure.
“I know the reality of this, I know what’s coming,” Heeney stated, acknowledging the limited timeframe she faces. “If I have kids in five years time, I’ll have less time with them.”
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