Living with a Huntington's Disease Diagnosis: A Ticking Time Bomb for 18 Years
For nearly two decades, Sarah Power has carried the weight of knowing exactly how her life will likely end. At just 23 years old, she received a genetic diagnosis that would forever alter her future: testing positive for Huntington's Disease, a fatal neurodegenerative condition that progressively attacks psychiatric, cognitive, and motor functions.
A Family Legacy of Illness
The diagnosis, while devastating, didn't come as a complete shock to Sarah. Her family history was already marked by Huntington's Disease. 'I vividly remember being five years old and learning my grandmother had this disease,' Sarah recalls. 'Someone from the Huntington's Disease Association explained it was hereditary, and though I didn't fully understand, I felt this darkness in the room.'
Her grandmother would pass away eight years later from complications of Huntington's, suffering from frequent falls, involuntary movements, and an inability to eat. Sarah's father, despite showing symptoms, insisted he had tested negative for the gene mutation and maintained this denial until his death from the disease in 2017 at age 63.
The Testing Process and Diagnosis
As a teenager, Sarah was desperate to know her own genetic status but had to wait until adulthood for testing. Shortly after her 18th birthday, she received a letter inviting her to genetic counseling. 'They knew my dad had it, and they were just telling me without telling me,' she explains.
For two years, Sarah underwent extensive counseling and neurological testing before receiving the definitive diagnosis at age 23. 'I cried more than I thought possible,' she remembers. 'The world was still turning, but it was as though it stood still for a while. I felt numb, shattered.'
Coping with the Reality
In the aftermath of her diagnosis, Sarah embarked on an extended backpacking trip to Brazil, Bora Bora, New Zealand, and Thailand with a friend. 'It was the best thing I could have done,' she says. 'We made as many memories as possible.'
Yet the escape couldn't eliminate the underlying fear. 'When you have watched loved ones die, knowing you're going to face it too – I still can't get that out of my head,' she explains.
Family Decisions and Living with Uncertainty
Sarah's brother eventually agreed to testing and discovered he didn't carry the gene mutation. 'I suspect he found the negative test result almost as hard as my positive test – like survivor's guilt,' she observes.
When Sarah met her future husband, she was upfront about her diagnosis. Though she had initially decided against having children to avoid passing on the gene, the couple eventually opted for IVF with genetic screening. After losing two babies, Sarah successfully carried her first daughter to term.
Then, in 2021, she became pregnant naturally – a development that shocked her. 'We could have had the baby tested for Huntington's at 12 weeks, but if the test was positive, they would have terminated the pregnancy,' Sarah explains. 'I just couldn't bear to take her life away. I wanted to let fate do its thing.'
The Ticking Time Bomb Mentality
Now 41 and a stay-at-home mother to two daughters, Sarah remains pre-symptomatic but constantly vigilant. 'Normally, onset is between 30 and 50,' she notes. 'I feel like I'm a ticking time bomb.'
Every dropped item or mistake triggers anxiety. 'I wonder, is this the start for me?' she says. 'I try to stay positive, but some days are harder than others. I just want and desperately need to stay fit and healthy long enough for a treatment to help me.'
A Breakthrough Brings Hope
In September 2026, Sarah received an email that changed everything. The Huntington's Disease Association announced a new treatment showing early results suggesting it could slow disease progression by up to 75%.
'I had to read the email several times – I couldn't sleep that night,' Sarah says with a smile. 'I've never let myself think about what it would be like to see my grandchildren, or whether I would need a pension. I just never dreamed that a treatment would come along.'
Cath Stanley BEM, Chief Executive of the Huntington's Disease Association, explains the significance: 'Around 8,000 people in the UK are living with Huntington's disease, with another 32,000 at risk. This treatment represents a huge step forward, though full trial results haven't been published yet, and regulatory approval could take several years.'
The treatment currently requires a major operation lasting more than 12 hours and may only work for people at certain disease stages, but for Sarah and thousands like her, it represents the first real hope after years of living with a death sentence.
'It's still sinking in – a pinch me moment,' Sarah reflects. 'It's the breakthrough we've all been hoping and praying for. Now, I might be able to grow into an old lady and enjoy all the things my mum has.'
